Learning to live with Ankylosing Spondylitis

All images provided by Spondylitis Association of America. A non profit making organisation.
All images provided by Spondylitis Association of America. A non profit making organisation.
It is very important that you listen to the Hospital and stop the Humira if any infection should start. IMMEDIATELY!
It is very important that you listen to the Hospital and stop the Humira if any infection should start. IMMEDIATELY! | Source

12th March 2010


Today March 12th 2010. I have finally been diagnosed as having ANKYLOSING SPONDYLITIS, and it seems that my case is very severe. This is all new to me. I have been in pain and un-able to do many things for a while now, which includes moving my neck, my back has been frozen solid for some years now. Also walking has been very difficult due to my hips feeling like they were seizing up. If I stand with my back against a straight edge, I can not touch it with my head. This is caused by my spine arching forward and having fused in that position. For 8 years now I have been completely unable to lay down to sleep, and have had to sleep in a reclining chair. Some days its all I can do, just to get up and shower, and other days I can’t. Also just putting on a pair of socks is almost impossible since my back will not bend. At some point in the near future this insignificant task will become something of the past. Even shaving is difficult since I cant turn my head to shave my neck. This often results in cuts. I have been taking Ibuprofen at the rate of 800 mg 3 times a day to dull the pain. This worked for a while, but, as anyone who has taken these drugs for any time knows, there are many side affects with taking so much for years on end, including bleeding from gums and in stools. The good news, is that, my GP has today given me some really strong pain killers called, DICLOFLEX 50mg. I have now had 2 doses of these and can report that for the first time in YEARS! I am without pain, at least while I am sitting. I have had to give up driving because my neck is almost frozen solid and wont allow me to look over my shoulder to see on coming traffic. Also speed humps are an incredibly painful thing when your spine comprises of one piece.

Until today all I knew was I am in pain most of the time, with the odd short break giving some short interludes between intense and crippling pain. However, unfortunately this will again become the norm at some stage. But until then I have decided to do all the things I have always promised myself. I am now permanently not able to work so many of the things I wanted to do, are out of reach. I have over the past couple of years, become less, and less able to work, and having been self employed this has resulted in getting deeper, and deeper into debt. Although I now only get Employment and support allowance, this is more than i have had for some time due to the amount of time I was losing.

Until Tomorrow

14th March 2010.

I was not able to post yesterday as my Brother was upgrading my computer, and I was gob smacked to realize just how much I rely on this thing. Yesterday was the first time in so long that I picked up a Book. Also I discovered that no one knows anything about this disease. It’s a really dirty word, disease.I have discovered that the one thing you don’t say to the uninformed is “Hi there, I have a disease!” You can instantly see the horror in their eyes as you reach out for their right hand, and walk toward them. I have to be honest though. Only a complete git would do that, but it was soooo much fun! Just knowing what was going through the mind of this nameless person.

I have discovered a really great site, that explains everything in clear English. This is the link http://www.spondylitis.org/about/as_treat.aspx It belongs to the Spondylitis Association of America.The one thing about this site is the cost of becoming a member. But I suppose that’s because I am British. I have been informed that the membership fees are purely treated as a donation and this worthy cause is non profit making. For anyone who is new to this disease, as I am. It will leave you feeling that you know as much as anyone else about it. Congratulations to the Americans, once again…Looking at the flip side. I then went to what I think is the best British site. http://www.nass.co.uk/ Wow what a contrast. I found this site hard to read for any length of time due to its colour scheme. The whole site just looks cheap, and because of that I found myself being drawn back to the American site again. This British site certainly is not going to win any awards. Having said all that, they are doing a great job and I feel they are probably very dedicated to what they do. I was also impressed when I saw they are much cheaper to join than the American site. But I do wonder how many people have been scared off by that awful site.

Ok so that is my Grunt over with. Onward. Yesterday those little pain relieving pills were working wonderfully. However I still cant stand for any period of time, without feeling like my hips are about to give way, and walking is still a case of a maximum of about 100 steps. After that I seize up and have to stop for a couple of minutes, before continuing on. I am waiting for an appointment to go to my local Hospital to see the Guy or Girl with all the answers. Yes I am talking about the Rheumatologist, and to be honest I am looking forward to picking His/Her brains. I want to know things like how long before I cant walk any more, and is their a more permanent treatment on the horizon.

One of the things that happen is you find people are commenting on how laid back your driving position is. By that I mean, due to the arching of my spine I had to put my seat in a fairly laid back position to be looking straight forward. I am the same when at home, I must look like a propper couch potato stretched out but its all about looking forward and not looking at the floor. It is impossible to stand straight, even at my snooker club people who I have known for years now refer to me as Quasimodo, and when you hear that its very difficult to pretend you did not. I am not writing about this to make people feel sorry for me. That, I can do all on my own. But if this Hub causes someone out there to recognise themselves and seek the medical attention that I refused for so long, then its worth sitting here typing, isn't it? Till tomorrow.

15th March 2010

The first thing to report is that I had a bad night. Fortunately I have some good friends that work nights, and I was able to phone them for a chat. Television is now getting boring, and computer games just mean that I have to sit in the same place for too long. However there is a bright side to all this, and that is I am going to the Snooker club later. I will be coaching one of my good friends. It is very difficult for me to play now, because when I bend to play my shot I am struggling to look down the Cue. This means it hurts and after a short time I have to stop. On the bright side, it does mean that the people who could never beat me can now experience that wonderful feeling of getting one over on me. This includes my Brother Martin. Just thought I would pop that in so he is in no doubt as to where he stands. THE HE! I just sit back and smile, as John tells me how well he played. He is a really good friend and he is getting married at the end of May. I was to be his Best Man, but had to step down. It is however still a day I look forward too. I am sure his wife to be will keep him under control. The lucky so-en-so is only marrying a woman that loves fishing. My ex sometimes used to bring coffee to the beech but when I got home she would always make me shower. Life is not fair.

Ok on to more sensible things. The pain killers are still the best thing since sliced bread. As long as I don’t have to walk too far. Last night, I decided to walk to the local shops. Big mistake! This little 5-600 Metre walk took well over an hour and left me in pain all night. I think the one thing I miss more than anything else is a car.

I have spent some time looking at the web for more info on this condition and I would recommend that anyone with this disease or with a friend or family member, who has it , downloads this.

http://www.spondylitis.org/about/action_guide.pdf

I have found this on the american site mentioned and linked earlier. It is Free and is superb. This site really is the best there is and I would recommend that if you can you should spend as much time reading it as possible.

16th March 2010

I had a bad night again, but ill put that down to playing Snooker last night. I really don’t understand how, 2 perfectly fit and healthy blokes can’t win. I went in there last night, and it was all I could do to look down the Cue. I have to stand with my feet apart and with bent knees. I must look a right plonker. But it’s the only way I can play now. Improvisation, I think that has to be the term. But any thought of making breaks are now in the past, but I really don’t care. Snooker is such a lovely game. You don’t have to rush, and no one is watching you when it all goes wrong. It’s not like barroom pool. We consider that to be a Kids game, little table, big pockets. If that upsets anyone, sorry but it’s just the way it is. Give Snooker a try and join the big boys. Anyway that’s enough of the silliness.

I am still waiting for my appointment at the hospital. This is taking too long, and ill phone my doctor later. The National Health Service in the UK is a Fantastic thing, but if you need an urgent appointment (unless its Cancer) forget it. Too many patients, and not enough money. I think that has to be a fair and honest assessment. The Government of this Country, and I am not talking about the Labour Party. It is who ever is in power at any time. They all see the National Health Service for what it really is. A Money Pit! But on the other hand, not one of them has the guts to get rid of it. Slowly we are starting to edge over to private health care, but many people can not afford that. The really stupid thing is, they just don't seem able to see there can be a happy medium, a split between the two. In my opinion America has gone too far down the line of Private Health. But we are not America, and our Governments are terrified of the electorate, so they just keep pouring money into a badly managed Health Service. This results in a shortfall in pensions, and people paying a larger and larger amount in Stamps and Tax. Please don’t think that I am suggesting that Health workers don’t do a brilliant job, because they do. Also our local GP’s are superb. But it’s the over management, and paper movers that are costing this country. That was today’s Grunt.

I have just had an Email from The Spondylitis Association of America, and a very nice Email it was too. They gave me more links and information which I will check out then relay on to this site. I will say this though. This Organisation is a non profit set up, and that is a welcome revelation. The images I have inserted into this Hub are courtesy of this wonderful organisation, and show just what people with this disease have to live with. But more than that. They show how much is now understood, and give some hope that sometime in the not so distant future, a cure or a more preventative treatment will become available. Of this I am sure.

17th March 2010

After spending much of yesterday in significant pain I had a great nights sleep. As I mentioned I had an Email from The Spodylitis association of America and I can now forward the extra links they have given me. This first one will only be of any use to people living in the USA, as it is a list of dates of seminars. If you are a sufferer and you can make it to one or more of these. I would love to hear from you after and maybe you could give me some new information, that I could include here for all.

http://www.spondylitis.org/patient_resources/seminar.aspx

The second is a link to their on line shop. It offers a whole list of reading material, and if you live in Canada, Mexico, or indeed the USA the first one is free. Guess ill have to pay for mine.

http://www.spondylitis.org/store/productlist.aspx?department=3




This is where it all starts to get interesting. This next link is to a forum where you and like minded people can chat and ask the questions you need to ask. Who knows. Someone may have an answer for you. If you’re anything like me, you will have a million questions and no one to answer them. Well now you do.

http://forums.spondylitis.org/ubbthreads.php?ubb=cfrm

I have been busy trying to find more information for you. By that I mean information you don’t have to be a millionaire to read, and you don’t have to have a degree in medical science to understand, and you know what? Everyone out there seems to want to get rich out of someone else’s pain. This is wrong. Yeah you guessed it I’m off on one again. But the way I see it, I’m sat here in severe pain trying to find answers for myself and anyone else who is suffering at the hands of this crippler, and everyone wants to charge me $ 30.00 to read about it. Now I understand that people need to make a living but surely they don’t need to take it from people who are unable to work due to their illness. The People who are afflicted by this, are by virtue, going to be financially challenged in a lot of cases. Today I am going to write to these sites and ask them to send me some free information that I can pass on to you all. Then Ill sit back and wait. This should be interesting. I will then forward on to all of you, any correspondence I receive, by publishing it here. Any sites that do not answer, well Ill let you know who they are too. Today’s Grunt is now over.

I have been busy and have found a couple of bits that may be of interest to many of you. The first is a link that will take you to a site offering a free monthly newsletter. I have already received this and can report that while I’m sure it contains plenty of very good advice and information, it does fall into the category of needing a Degree to completely understand it. However since one or more of you may have the said Degree. Here is the link http://www.ankylosingspondylitis-info.com/mda/index.php?gid=RH001&?a=a&assoc=Google&keyword=ankylosingspondylitis


18th March 2010


Yesterday I contacted several sites with the view of them freely giving information or perhaps a chapter of their books to this site as a good will gesture. The first one has already responded but have asked that I tell them what parts of their site I want to include. Just to make sure it is included in context. This is the email I received.

Thank you for writing to ask permission to insert some of our
information into your blog. Would you be able to let me know
specifically which bits you want to insert because we would need to
reassure ourselves that anything you use still retains its medical
context. Could the blog also acknowledge where you got the information
from, link to our leaflet on Patient UK (eg
http://www.patient.co.uk/health/Ankylosing-Spondylitis.htm) and note
that it is being used with permission.


I have now read this leaflet/flyer, and have found it informative, but un-interesting and this site, although being run by Doctors and Nurses, is afraid to commit itself to its own advice. The leaflet/flyer, has a comprehensive disclaimer at its foot. Seems the P.C brigade have struck again. I will not be including anything else from this site. I am looking for people who are sure about what they are telling us, not people who want to hide behind these disclaimers all the time. We all know that this disease is different in each patient. So why not just point that out and tell us that we need to be supervised by a local physician.


The saddest thing, is I have done the first 49 years of my life and been completely unaware of this disease, and therefore many other silent diseases. It stands to reason then that many other people are unaware too. I have been so surprised at the shear number of people who are visiting this site on a daily basis. If just one of you discovers something new and helpful then you have made my day. But it is my goal to get this message out to people all over the world, and to save as many of them the pain that comes with not understanding what is happening to your Body. One thing I have noticed as I read the literature I am passing on to you, is the growing list of symptoms I have experienced and still am, and these actually started when I was about 15. Now that’s a surprise.


These include.

Lower back pain when I was 15.

Upper back pain, spreading to shoulder blades.

Left Hip Pain continuously.

Right hip Pain, when walking.

Spine arched forward including my neck.

Right Kidney pain. Intermittent.

Left knee pain continuously for the past few weeks.

Pain in my Heels.

Watery Eyes, with blurred vision in the mornings.

Very limited bowl control.

Sex is not possible.

I have even had two suspected heart attacks, yet when on monitor there has been no sign. It seems that Angina like symptoms are also possible.

These are my symptoms. It is important to note that each case is as different as fingerprints. You will have some of them, but its very unlikely you will have all of them. I just got lucky! The simple answer is, if you are unsure visit your Doctor. At the very least you will have a set of x rays and some very good pain killers.

Well its 18.30 here in sunny Bournemouth and I’m sorry to report that I have had no further responses to my letters yesterday. However I have just sent out a batch to some of the better sites I have found. Unfortunately I have to go out this evening but I will be posting when I get back in.

19th March 2010

Today I am going to concentrate on Scams aimed at people with AS and I have a real beauty for you.

The first thing I want to say is, I have read just about every legitimate site I can find on line, and not one of them offer a cure! That’s because there is no cure, but with diet and managed physiotherapy the SYMPTOMS can become reduced to a manageable level. So when I find sites out there that want to sell US books, and they say things like, and I quote. “ PUT ANKYLOSING SPONYLITIS INTO TOTAL REMISSION FOR $19.00 GUARANTEED. I get a little wound up. This is a scam and I am not asking you to avoid buying this type of material, I am telling you. Don’t be fooled. I will be emailing this person later and asking them to explain their reasoning. The site that I refer to is: http://www.ankylosingspondylitisdiet.com/?gclid=CITJi4PcxKACFU-Y2AodcywMeA

This is what Wikipedia has to say about Remission. Please note that this site is offering COMPLETE REMISSION! Or 3x your money back.

Remission is the state of absence of disease activity in patients with known chronic illness that cannot be cured. It is commonly used to refer to absence of active cancer or inflammatory bowel disease when these diseases are expected to manifest again in the future. A partial remission may be defined for cancer as 50% or greater reduction in the measurable parameters of tumor growth as may be found on physical examination, radiologic study, or by biomarker levels from a blood or urine test. A complete remission is defined as complete disappearance of all such manifestations of disease. Each disease or even clinical trial can have its own definition of a partial remission.

Ok then point made I hope. It will be interesting to see what the people /person has to say. I find it sickening that someone can use someone else’s pain to tease money out of them. I am afraid that today’s grunt may go on a bit, but this is important, especially since there seem so many sites springing up that want to take you for a ride. If any of us could get total remission, we would grasp it with both hands. The thought of taking the Kids to the park, and racing them to the swings. To go for long walks along the beech with the one you love, or just to be able to walk to the local shops, is a very strong persuader, and its one that certain people have found a way of exploiting. Don’t buy these books. Talk to your Doctor or, Dietitian. These are the people who have spent years studying proper Nutrition, and what it can do for you, and you’re Body. The following is the Email I have sent to the Author of this Book.

I run a blog for people with AS. Today while searching for valid scientific data, about AS I came across your site offering Total Remission within 6 weeks or 3x your money back. My question to you is, are you guaranteeing this for all AS sufferers, or just those with light symptoms. I personally have a completely fused spine and neck. If you are telling me that your book will put this into complete remission, I would love to know why, and how. How does diet remove the bone growth that has fused my spine, and how will it affect my hips that I will need replacing very soon. If you do have a miracle diet then please share it with the many thousands of people who are desperately looking for a relief from the pain of every day life. AS is as different for you, as blindness is, from short sightedness. So please could you tell me how your book will help everyone with AS get total and full remission. Many thanks.

I am only guessing of course but I think that may cause a slight change in wording on this person’s site.

I am posting this now but will be working all day to search out more of these scams, and will keep you all in the picture, later today.

Well as promised I have been Busy, but I’m not the only one. It seems the site that I emailed this morning has been changing the wording of his site, from complete remission, to remission. However if you read his site and go to the FAQs there is a paragraph in there that he seems to have forgotten. I can not duplicate it as it’s protected by copyright. But to sum it up, it suggests that after reading his book that only took him a year to complete including all the research and trials. After reading you may decide not to continue seeing your doctor, and may be quite happy to just follow his advice. Wow how dangerous is this man? At the foot of the page there is now a disclaimer that says the FDA has not evaluated his book and you SHOULD always follow the instructions of your doctor. Please Read this site by all means, but this guy is a con man, and I will be reporting him to the FDA.

I have now reported this site to the FDA and will let you know the outcome.

I have now had a response from this site .

Roy:

Perhaps I should be more clear -- it can't reverse any damage the disease has already caused, but the diet is clinically proven to reduce or eliminate the symptoms (i.e. pain & inflammation) caused by the condition. As for your particular case, I can't say whether the information I provide can help because I am not a doctor and I do not have all the information. That's why I offer a guarantee -- you shouldn't pay if it doesn't help, so I'll give you 3x your money back if the diet doesn't work. this is then followed by a disclaimer.

DISCLAIMER: The contents of this e-mail, such as text, graphics, and other material ("Content") located within this e-mail ("E-mail") are for informational purposes only. The Content is not intended as a substitute for professional medical/ advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of Content found in E-mail.

If you have a medical emergency, call your physician or 911 immediately. I, on behalf of ConquerAS, do not recommend or endorse any specific third-party tests, physicians, products, procedures, opinions, or other information found in E-mail. Reliance on any information provided by ConquerAS, its employees, or others appearing within this E-mail is solely at your own risk.

Hopefully you will have noticed that he has now changed tact all together and is sugesting that you should always contact your Doctor.

20th March 2010

Well I had a bad night last night. But not because I was in pain, that was no worse than usual. I had feelings of guilt crawling all over me. Don’t misunderstand me. What I did was 100% right. But maybe it was not for me to do it. So I have decided not to pursue that line any further. I may, and may not have saved some of you from buying into what is definitely a scam designed to sell you something you’re Doctor would happily give you, and not make wild claims about its healing properties.

What I want to do today is talk about disability living allowance. This is aimed primarily at British people. Unfortunately I don’t know if the same or an equivalent is available elsewhere. I only found out about this yesterday, from NASS. I will add a link to this part of the NASS site for you. There is already a link to the NASS home page earlier in this Hub.

http://www.nass.co.uk/public/documents/Disability-Living-Allowance.pdf

This link will explain everything about claiming this extra money that many of you are entitled too. There are two main levels and they are High, and Low. These are £49.10 pw, and £18.65 pw respectfully. There is also a care component and these are highest £70.35 pw. Middle Rate £47.10 pw, and Lowest Rate £18.65 pw. It is important that you understand that these payments are not means tested and are available to those of us who are in the advanced stages of the disease. Also worth noting, these payments DO NOT affect any other benefit you may be claiming. It is also probable that if you are claiming one of these benefits i.e. The high or low, that you will ALSO be entitled to one of the care allowances. But this depends on your personal circumstances. What it comes down too is can you cope on your own, or do you need someone to help you with things. The forms are readily available, and although they are quite long they are straight forward. You can get the first of these benefits even if you are working. It seems that the distance you can walk is the criteria.

The following has been taken from the Nass web site. Nass are a registered charity and are non profit making.

The mobility component

The mobility component is paid to help cover the extra costs that you may have in getting around. It comes at two different rates: the higher and the lower rate. In many respects the two rates represent different types of benefit, paid for very different reasons.

The higher rate

If you have substantial difficulties in walking, the higher rate of the mobility component may apply to you. The difficulties that you have will be most likely due to pain or stiffness in your spine, pelvis, hips, knees, ankles or heels. Your mobility may also be limited by fatigue.

Most people with AS who are awarded the higher rate mobility component get it because they are considered to be ‘unable to walk’ or ‘virtually unable to walk’. The first category is pretty straight forward, and can include people who can only ‘walk’ if there is someone with them bearing their weight. The second category includes people who can walk only very short distances.

When it is being decided whether or not you are ‘virtually unable to walk’ four things matter:

  1. The distance you can walk.
  2. The speed you can walk.
  3. The time it takes you.
  4. The manner in which you walk.

The lower rate

If you are able to walk reasonably well, but need guidance or supervision to do so, the lower rate of the mobility component may apply to you. It doesn’t matter if you can manage to walk without guidance or supervision in places you know well, as long as you generally need guidance or supervision when you are in unfamiliar places. Your need for guidance or supervision may be due to a tendency for your knee or ankle joints to give way.

You may also need guidance or supervision if the AS has affected your Eyesight.

The care component

The care component is paid because the symptoms of your AS are such that you need either care or supervision from another person. The care you receive must relate to some kind of ‘bodily function. Typical examples are dressing, bathing, toileting and getting safely around the home. Generally, care does not include domestic tasks, such as cleaning the home or shopping. The supervision that you need must be necessary to avoid substantial danger to yourself or others. It does not matter if you do not actually receive the care or supervision at the moment, you may for instance live by yourself, but what you do have to show is that there is a need for it. This need has to be reasonable, but it does not have to be medically required.

There are three different rates for the care component, reflecting the amount of care or supervision that you need. The highest rate may apply if you need help throughout the day and the night. The middle rate may apply if you either need help just throughout the day or just throughout the night. The lowest rate may apply if you need help for just part of the day or you are unable to prepare a main meal for yourself. These are simplifications.

I hope this has been of interest to some or all of you and I can only say that I wish I was able to give the relevant information for all nations. But that is not possible. However I would think that a similar programme would be available to people of most nations. It is always worth asking.

To those who make life possible

At this point, I think its time the people who hide in the background got a mention. These are of course our friends and family. Without these people around us to do little things like chat when we feel down and to take us to the shops, and in my case to run me around and prove they are real friends we would be sunk. I would like to say a huge thank you to my Brother Martin.My ex boss and friend Brian, who is always interested in how things are going. My long term friend John, He’s the really old , and short one, my very good friend Les, not to forget Billy, and last but definitely not least, my lovely sister Tina. These are my close circle of friends and family who make each day possible for me. I believe that we all have our own circle, and we should just say thank you now and then, for without them, life may well become intolerable.

21st March 2010

I have been and I still am amazed at the interest this Hub has caused. This Hub has been up for 9 days and I have had literally Hundreds of visitors. This has, to say the least, Humbled me. It has also shown me that there are many people out there with health problem’s, and many more who care about others. This is a refreshing side of Humanity. Generally we have no time for anyone but ourselves. I finished yesterday with a thank you for those I know, but I start today with a thank you, for all those I don’t. It is people like you who keep coming to the site that keep me keen to continue. Once again thankyou.

I would like to look at the different drugs that are being prescribed, and some new ones that you may not be aware of yet. It is worth me saying right from the outset here that I can not recommend any drug, for 2 reasons. The first and most important of these is I am not a doctor, and the second is I have no experience of most of them. Today I just want to tell you about the drugs that are available. It is up to you if you want to talk to your doctor about any of them. What follows is a link that lists most of the well used drugs, and some very new ones.

http://www.spondylitis.org/about/spondylitis_medications.pdf

This does not show any potential side affects, so I have searched the net to bring some of these to you. However these POTENTIAL side affects will not affect everyone, and could be more pronounced in some. I will list them as they are listed in the table pertaining to the link above.

Indomethacin is in a group of drugs called nonsteroidal anti-inflammatory drugs (NSAIDs). Indomethacin works by reducing hormones that cause inflammation and pain in the body.

Indomethacin is used to treat pain or inflammation caused by many conditions such as arthritis, gout, ankylosing spondylitis, bursitis, or tendinitis.

Indomethacin may also be used for other purposes not listed in this medication guide.

What is the most important information I should know about indomethacin?

This medicine can increase your risk of life-threatening heart or circulation problems, including heart attack or stroke. This risk will increase the longer you use indomethacin. Do not use this medicine just before or after having heart bypass surgery (also called coronary artery bypass graft, or CABG).

Seek emergency medical help if you have symptoms of heart or circulation problems, such as chest pain, weakness, shortness of breath, slurred speech, or problems with vision or balance.

This medicine can also increase your risk of serious effects on the stomach or intestines, including bleeding or perforation (forming of a hole). These conditions can be fatal and gastrointestinal effects can occur without warning at any time while you are taking indomethacin. Older adults may have an even greater risk of these serious gastrointestinal side effects.

Call your doctor at once if you have symptoms of bleeding in your stomach or intestines. This includes black, bloody, or tarry stools, or coughing up blood or vomit that looks like coffee grounds.

Do not drink alcohol while taking indomethacin. Alcohol can increase the risk of stomach bleeding caused by indomethacin. Do not use any other over-the-counter cold, allergy, or pain medication without first asking your doctor or pharmacist. Many medicines available over the counter contain aspirin or other medicines similar to indomethacin (such as ibuprofen, ketoprofen, or naproxen). If you take certain products together you may accidentally take too much of this type of medication. Read the label of any other medicine you are using to see if it contains aspirin, ibuprofen, ketoprofen, or naproxen.

What should I discuss with my healthcare provider before taking indomethacin?

Taking an NSAID can increase your risk of life-threatening heart or circulation problems, including heart attack or stroke. This risk will increase the longer you use an NSAID. Do not use this medicine just before or after having heart bypass surgery (also called coronary artery bypass graft, or CABG).

NSAIDs can also increase your risk of serious effects on the stomach or intestines, including bleeding or perforation (forming of a hole). These conditions can be fatal and gastrointestinal effects can occur without warning at any time while you are taking an NSAID. Older adults may have an even greater risk of these serious gastrointestinal side effects.

Do not use this medication if you are allergic to indomethacin, or if you have a history of allergic reaction to aspirin or other NSAIDs.

Before taking indomethacin tell your doctor if you are allergic to any drugs, or if you have:

· a history of heart attack, stroke, or blood clot;

· heart disease, congestive heart failure, high blood pressure;

· a history of stomach ulcers or bleeding;

· liver or kidney disease,

· a seizure disorder such as epilepsy;

· asthma;

· polyps in your nose;

· a bleeding or blood clotting disorder; or

· if you smoke.

If you have any of these conditions, you may need a dose adjustment or special tests to safely take indomethacin.

FDA (Food and Drug Authority) pregnancy category C. This medication may be harmful to an unborn baby. Tell your doctor if you are pregnant or plan to become pregnant during treatment. Taking indomethacin during the last 3 months of pregnancy may harm the unborn baby. Do not take indomethacin during pregnancy unless your doctor has told you to. Indomethacin passes into breast milk and may affect a nursing baby. Do not take indomethacin without first talking to your doctor if you are breast-feeding a baby. Do not give this medicine to a child younger than 14 years old without the advice of a doctor.

This is quite a long and drawn out product warning , but I had to include it all to be safe for you.

22nd March 2010

Yesterday I started to search for possible side affects that drugs may give. I listed One of these, and it went on and on. Therefore I have decided that its not a good idea to do that here, but I will be setting up a new blog later today that will be called Drugs used for pain relief and their side affects. I will only include the manufacturer’s listings so you are at least up to speed when talking to your Doctor. I will also attempt to list them as per the chart that I linked yesterday. It is worth noting that not all drugs will be available in all countries. But a quick Internet search will tell you if they are available in your area.

It is obvious that there are many people out there with symptoms that are still not seeking medical attention. If you are suffering don’t do what I did and soldier on. This is a REALLY bad thing. Let me explain. I have had this disease basically since birth. I have had symptoms since I was about 15 (to the best of my recollection), and I waited till I was 49 to do anything about it. I was scared. I was convinced I had Cancer and that was what all the pain was about. I was also a complete coward, and wouldn’t go to the doctor, simply because I knew he would give me bad news. I was a plonker. What the hell was I thinking? It does not matter what is causing the pain, its not going to go away without medical treatment. IS IT? Look Guys and Girls. Please don’t do what I did, It just means many years of pointless pain when it could at least be eased. But more important than all of this is the fact that now I have a diagnosis. My son and my Brother are seeing their respective Doctors. This would not have happened if I had not finally done the right thing. So you see if you are suffering now, see your Doctor and you may well save your family a lot of pain too.


So what does Ankylosing Sponylitis mean. Well both words are Greek and put together they mean the fusing and inflammation of the spine (but not limited to the spine).

ANKYLOSING. This is when the spine fuses and becomes one piece. The first you will notice will be that it’s harder to reach to put on your socks, and even cleaning your self after the toilet. And when it gets bad you may even have a stiff neck that never gets better.

SPONYLITIS. This is the inflammation of the spine. Look at the images at the top of the page and both will be explained. The inflammation is your early warning. Unfortunately we do tend to stay away from the Doctor until its too late.

Simply Put, if you have back pain, and if you develop any of the symptoms that I have mentioned. You really must seek medical advice. You could be saving your children a lot of pain in later life. If you needed a reason to go to the Doctor, then let that alone be it.

AS, is a progressive, rheumatic, degenerative, disease. That said it takes years for the symptoms to become really bad, and in a lot of cases they never will. Many people with the disease never even know they have it. Some people will develop a stiff back in the mornings but with exercise and that could just be going to work, for manual workers, the symptoms soon go, each day. Many people will be fooled into thinking they just slept awkwardly and will put up with the stiff neck for a long time before finally going to seek medical advice. This I understand as I was one of these.

I AM REALLY SORRY BUT I HAVE BEEN WORKING ON THE LIST THAT I PROMISED AND HAVE COME TO THE CONCLUSION THAT IF SOMEONE READS MY BLOG AND USES A DRUG THAT I HAVE GIVEN DETAILS ABOUT, AND THEN HAS A PROBLEM, I WOULD BE OPENING MYSELF TO ALL SORTS OF PROBLEMS. SO I HAVE HAD TO ABORT THIS IDEA. HOWEVER IF YOU WANT TO KNOW ANYTHING ABOUT THE DRUGS YOU ARE USING OR INTEND TO USE YOU CAN FREELY GET ALL THE INFORMATION BY USING GOOGLE. JUST ENTER THE NAME OF THE DRUG AND CLICK SEARCH ITS AS SIMPLE AS THAT.

23rd March 2010

Well last night I forgot to take my pain killers and wow am I paying for that. I slept in my normal chair but when the pain woke me, I found that I could not get out to go and take them. It then became a battle between courage (of which I have very little), and pain. I knew I had to get up to take the pain killers but in doing so I would create much more pain than I was already in. Well in the end I had to make a move. 2 steps, that’s all, just 2 steps and I was totally crippled up with the pain. I hope no one else out there is as bad as I am.

I have just been on the phone to my Doctor to ask about the appointment at the hospital I am still waiting to hear about. They have now assured me that ill get it within the next few days. Problem is, I think I am pinning too many hopes on the Rheumatologist and what this person can do for me. I am expecting great things in the form of pain relief when I finally do see Him/Her. I would so much like to be able to not feel like I have a plank strapped to my back all the time. I tried to walk to the local shops last night. That’s probably why I am in so much pain today. I failed. I did not get any further than the gate before my hips started to seize, and had to turn back shortly after. It does seem that since I have been off work that this disease has really taken hold, although it’s fair to say that it was reaching the point of continuous pain anyway. I think that maybe I am just having a bad moment. One of the joy’s of AS is that you can be quite ok one day and the next, you wonder how you will ever get through. Anyway that’s enough of my woe’s lets move on.

This may sound like I’m covering old ground, but follow and you will see where it leads.

AS affects about 1 in 200 Males, and 1 in 500 Women, in the UK. However when I have checked the numbers for the US. The Men come out about the same, but the Girls are about 1 in 600. Why?

This could be due to a number of factors, but I’m betting on one. I believe it is medical insurance. Here in the UK we get free health care. But in the States people have, to have insurance. So you look at the numbers of people WITHOUT insurance compare that to the number of adults, then you consider that even though we are in the 21st century men do tend to work more than women, and single Mothers would have much less money than Guys. So it looks like unmarried Mothers are going to be high on the list of people who have not had a diagnosis. Also of course there will always be other groups such as poorly paid people and illegal immigrants. Plus a lot of these people would not have severe symptoms. So that’s where I believe the extra .00033 % has gone missing.

According to a census taken in 2004. The number of unmarried people in the US was 89.8 million. 32% 0f those were unmarried Mothers. This equates to 28,736,000. The total population of America in 2004 was given as 295,734,134. Of these 51% were Women. So that’s about 150,000,000 Women. This then means there are about 16,000 undiagnosed Women in Central America. So the numbers should be about the same as here. So if you are one of these women and you are suffering seek help, this disease is no fun when it takes hold.

24th March 2010

Today I start with an Hooray and a Boohoo. Hooray my appointment is here. I had to go on line to book it. Boohoo, it’s not till the 13th May. That seems to be sooooooo far away. This goes back to what I said about early appointments and the NHS. I’m not really moaning, it’s just that when it’s you that’s in pain, you want everything NOW and 6 weeks is a lifetime away. The countdown is now on.

This is my second attempt at this today. My first ended abruptly due to having had a really bad night again, and then needing extra sleep. I have found that I am sleeping for about twelve or so hours a day now. To be honest I don’t know if it’s just boredom or the AS. What I do know is I am now getting a lot of pain in my lower back again. I have not had lower back pain for a very long time. This could be for a number of reasons. I am now spending a lot of my time in a computer chair, or it could be that my posture has changed. I don’t know which of these is true. Just one more question for the man in the know. Ok. Ok. Or woman. Happy now?

For me this is Stew day. It’s the highlight of my culinary week. Most of the week it’s frozen curries, but today I cook a Stew. This is a real test for me, because I have to stand for more than a couple of minutes at a time. To be honest, it is a hard thing to do, but it’s worth it. Not just because I get to stuff myself with freshly cooked food. It’s because, I did it. Every week I prove that I can still do some things, and when the list of things you can’t do keeps on growing, it’s worth every pain filled moment, and I will continue to carry out this simple task for as long as I’m able. This then is an important task for me, just as you will all have your own, and they are all just as important as any other. If you are in a lot of pain and you can force yourself to do something, this is every bit as much an achievement as someone running a marathon. So when you manage to do things that make you groan at the thought of doing them, stand back and admire your success. Just one more reason to keep trying.

25th March 2010

If you’re anything like me you want to know what the odds are that your children will have this too. It seems that to have AS you need to carry the B27 Gene. Well only 7% of the population (figures are for Britain) have this gene, and of those only 5% develop the disease. However once the gene is in your direct family, then the odds of transmission is about 1 in 2 for boys and 1 in 4 for girls. The safest way is if your child during his or her teen years exhibits symptoms of lower back pain then a visit to the Doctor for a proper diagnosis is the way to go. If He or She has just been over doing it then you will feel better, and if they do have it, then you will know they will feel better soon. It’s a win, win even if you lose, I think.

80% of people with AS take NSAIDs these are Non Steroidal anti inflammatory drugs. Much easier to say NSAIDs. These have been shown to be complimentary to Physiotherapy. Together they do seem to offer a real treatment that can over time improve movement, and lessen pain.

There are many Exercise DVDs for the AS sufferer. One of the best places in the UK to find these is NASS. Their Telephone Number is 020 8948 9117.

For the USA. Contact The Spondylitis Association of America on.

Toll-free Phone Number (U.S. Only): 1-800-777-8189

For other countries check the phone Book or internet. Either way if you want to follow an exercise regime specifically designed for people with AS, it's worth taking the time to make sure you're doing it the right way.

Alternative Therapies


I have spoken to Nass at length about the idea of these complimentary therapies, and while they are all for you seeking whatever help you think might help, they are also keen to point out that forceful manipulation treatments are not a good idea. Their members have tried all sorts of different therapies, such as acupuncture, deep tissue massage, aromatherapy, Reflexology, and Homeopathy. None of the members reported any benefits. However there is evidence that massage can be beneficial. What ever you decide, make absolutely certain that they understand the condition and that they belong to a relevant professional body.

26th march 2010

28th March 2010

Hi all. I have had the best few days as I was asked to stay at a friends place and other than sleeping arrangements, it was tickety-boo. That means GREAT! But I’m back now and I will be posting in a couple of hours.

I have been continuing to read while I was away. One of the most inspiring sentences I read was. Patient Education, is as important as patient suffering, both teach them how to manage AS. This is very true. On the one hand, the education tells us what, and why, and why not. The pain certainly tells us the why not, and in many cases also the why. Just not, the what it is.

When sitting it is important to only sit for a while, and if you are anything like me, you will not be able to sit for long. At home I have very little space and I spend most of my time sat. If not in one chair, Ill be in another. I have a comfortable computer chair that I spend quite a lot of time in. However it’s only any good due to my looking down to type. I have found that if friends come over then I have to move, so I can see their faces. OK it’s not as bad as that but it does become painful after a short time. I find that I have to be able to sit in a really bad position to be able to look straight at them. When I have to move, I make a cup of tea of something. It wouldn’t be so bad except, this stresses my hip so I start to suffer with that. It’s a vicious circle.

It’s important that if you drive, and your neck becomes rigid, as mine has, that you accept that you are now unsafe! Not just to others, but to yourself too. If when you reach junctions you find that you are looking through the corner of your eye to see what is coming. Don’t be a fool. Give it up. I have heard that its possible to get mirrors that give the extra vision. If that is so then for some people this might be advantages. However, if you can put your honesty head on, and look at your own driving. You will know if you should give it up. I was only able to continue for so long because I drove nights, and instead of looking for cars, I was looking for headlights. Even then I was not able to judge their speed or distance very well. In short I became dangerous and I ask you all not to do that. I was driving 12 hours a day every day, until the last year or so, and I still had a hard time. Not being able to drive any more is like having your legs cut off, especially when every step is so damned difficult. Sitting in the passenger seat is even harder, but everyone is just that little bit safer. For me another hard thing is getting in and out of other peoples cars. If they don’t have very high doors I have to get in very carefully as my neck won’t bend to allow easy entry and exit of the car.

31st March 2010

Really sorry guys I'm A bit ill at the moment be back in a few days.

1st April 2010

First let me say, that I missed posting over the past few days. I am a Little better now and will post today.

The first thing I want to get off my chest is, a little grunt,, and its all to do with being paid on time. Now maybe I’m Just stupid or something, but it seems to me that if someone is claiming benefits, then that person is reliant on being paid on time, and if that person is not paid on time then this could cause needless hardship. Well, I am that man, or should I say one of those people. I have been returning my sick notes to Swindon as requested. However this time round they did not send out a returns sheet. This is a piece of A4 with the words Reply Slip-For Sending Something Back To Us. So I phoned them and they sent me an envelope, but no Reply Slip. I waited a few days and then contacted them again. Then they sent one out. However by now my sick note is a week late going in. I should have been paid on Tuesday last, and this morning I have been told that I might get it on Saturday. Whoopee. To be fair I would have followed it up earlier if I was not ill. If any of you out there get the same problem, you must NAG them continuously, or you will be kept waiting. I am fortunate that I have many friends and family that could help me out if I needed it. Not every one is in that boat. It’s worth remembering that these people who are paid to pay you. Get paid even if you don’t. So make sure you don’t go without.

I have been sent a book by NASS. It is called “ A Positive Response to Ankylosing Spondylitis”, and it’s very good. It is a free book, full of good information. I have had reason to contact them twice, and on both occasions, I have been met by a warm friendly voice. These people are HAPPY TO HELP! I have spoken to Sally and Ingrid. If you need to contact them, They will be Helpful.

To get back to the Book. It is full of information, some of which I have already added to the site. But much that I have not. This is for no other reason than, I just have so much information to go through. The Book contains a very useful section on exercise. Yes the get off your bum and do something about it, stuff! There is too much in there to go through here. Give them a ring and tell them Roy told you to phone. They won’t have a clue, who I am but it will give them something to think about. There is also a membership application form, and for 3 quid you really can’t go wrong. Support these people, and they will be there to support you. Until Tomorrow.

2nd April 2010

Last night was one of my worst. I asked a friend to take me to the local shops, and just walking around the shop, I was in so much pain with my Hip. My left hip gives so much pain at any time whilst my right seems to seize up. My Friend had parked about 30 Meters away. It was all I could do to get to the car. However, once finally in the car the pain was gone. That is until I had to move to get out again. Getting out involves lifting your leg a few inches to get over the door seal. This was all but impossible. Then I had to put my weight on it and (**+@#) did that hurt. I honestly thought that I had a dislocated hip. From that moment on I was in pain all night until about 6 this morning when I took my next dose of pain relief. I was then able to sleep. Once asleep I slept well. Oh I also had an invite to dinner and a games night last night, something else to look forward too. I think it’s very important to take all the positives in life, and use them to give you something to strive for. Let me explain. If we just sit there in pain and feel sorry for our selves, then we are on a one way trip to oblivion. However if we are always looking for little escapes we will find them. If you are invited out, say Yes! You may have to change your regime a little by perhaps waiting an hour or so to take your pain killers. But it’s worth it. The people, who invited you, did so because they wanted too. Not because you asked them too. So go. Make an evening of it, you may even actually enjoy it. But be sure not to overdo it. A guest in lots of pain will spoil the night for all.

I have been in contact with a Doctor, who lives in the U.S. He actually left a comment at the foot of this Blog. He has suffered with AS for a very long time, like many others. However unlike many others, he is in the position to find out about any new treatments that may be available, or may be about to become available. He has offered to keep me informed, and I will in turn keep you informed.

The internet is a wonderful thing. It allows anyone to search for anything, and in most cases to find it. But it also allows people like you, and I, to communicate. This should be looked at as a tool. I have already given the link for a Forum where anyone with AS can go and chat to or just read other peoples chat about their experiences with, and ways of dealing with AS. Use it. You may sometimes feel like you are alone, but actually you are just one, of a world wide community. Here is the link again.

http://forums.spondylitis.org/ubbthreads.php?ubb=cfrm

Please make use of it. You will be surprised at how many people out there are in the same boat. Until Tomorrow then.

3rd April 2010

Well it’s 5.00 am and I am still up. Not because I like being up, but because these pain killers seem to, not be working so well lately. The worst thing is its Easter weekend and I won’t be able to see the Doctor until Tuesday at the earliest. I think it is about time I asked him to supply me with some of the better drugs that are available. I was going to wait until I saw the rheumatologist, but it’s now obvious that this is not going to wait that long. It seems that now I have stopped working this disease has gone into over time, and is really out to get me. I can, and do, put up with quite a lot of pain, and consider it to be part of every day life now, but its getting so bad, that it’s hard to get into a comfortable position any more. Also I have to go to do some shopping later, and with the way it’s been going over the last few days, I Really am not looking forward to that.

Talking of Easter. May I take this opportunity to wish each and every one of you a very happy Easter. I will try to post again later.

11th April 2010

Unfortunately I have to advise that I am in more pain than I can ever remember. The pain Killers that I have do not seem to be working at all. The strangest thing is they seemed fine until I got my repeat prescription. Same name but different manufacturer. This of course may not have any baring on my situation. Also I am sleeping about 18 hours a day now and most of the time just waking to drink and use the toilet. This is the reason I have not posted lately. I will post again when I have something worth mentioning.

13th April 2010

Yesterday after the week of hell. I went back to my Doctor, and asked him for new pain killers. He was very happy to help and prescribed Zydol 50mg, and a separate anti inflammatory. The Zydol are Opiods, and are addictive. However they are very potent and I was able to sleep easily. I have just woken from 8 solid hours. I am in no pain at the moment, and I have decided not to take them, unless I have too. In this way I should be able to keep the full benefit of these tiny capsules.

The new anti inflammatory tablets, are Orudis, Ketoprofen. These also seem to be having a marked effect, and are listed on the drugs page for which I gave the link earlier. Here is the link again to save any need of searching what is now becoming a large site.

http://www.spondylitis.org/about/spondylitis_medications.pdf

I have been prescribed the 100mg which you will notice is not listed, and therefore, one can only assume that this is a new addition to the Ketoprofen family. These have to be taken with food, which is a direct contradiction too the Zydol, which do not, and what’s more, the Zydol, actually seem to have the effect of removing hunger pangs. I have already noticed this since I am not hungry even after only eating 1 sandwich and a couple of digestive biscuits yesterday. I will monitor this effect today to see if this continues.

2nd June 2010

Its been a long time since I last posted, and so much has happened, so ill do my best to fill you all in.

First I had my appointment with the Queen of docs, the Rheumatologist.

Such a small lady, and such a lot of pain. But she was able to tell me some really good news. I am not gonna get any better! She has however started me on an intensive course of physio therapy. This is supposed to slow the disease. I do as much as I can each day and this includes walking as far as I can, and then one more step besides. This may seem insignificant, but when every step is full of pain, trust me, it’s not. I have today been issued with my connect bus pass. I can now go anywhere in the UK on a bus for free. This is a wonderful idea. However getting to the bus stops is something of a major task, but I am grateful as, if I find myself stuck somewhere I will always be able to get home.

I am also now a registered disabled person, and will be getting my radar key soon. LOL. That’s a joke that other disabled people will understand.

I think it is pertinant for me to say that this country, may be wrong about a lot of things, but it does know how to look after the week, and broken. I really do not think that many other countries can, or do offer the same level of assistance to its disabled. Some times I am proud to be British, and I am proud of our Legal system too.... Enough said. Just want to say a HUGE THANK YOU TO H. You have set my mind at rest.


I intend to add to this Blog on a daily basis where possible, and welcome the chance to converse with other people with the same disease.

31st August 2010


It has been quite a long time since my last update, so there is loads to tell you.


Let’s get rid of the bad stuff first.


I tried to get my Hackney license back but the powers that be, were having none of it. They (rightly, if I’m honest) said that I would need to be able to handle luggage, and as any cabbie knows. There are many people out there who believe that going on holiday is akin to moving house, or country. These people go out and find the super sized suit cases, fill them with everything from their entire wardrobe, every pair of shoes they own, and then go to the shed and start emptying that too. I used to cringe when ever I saw these monsters being dragged down the drive, and often used to mention that they should have booked the transit!!! These people alone would stop me from doing my job. It seems to be a cruel irony that the one job I have had that I truly loved, is the one job that I can no longer do. But why dwell on the bad things, when I have so much positive stuff to tell you….


Lets start with my Hospital visits. My rheumatologist is nothing short of brilliant, and she has started me on a course of steroids, a quick jab in the leg, and my doctor remarked that he had never seen me stood up so straight when I next visited him. This has to be a good thing. Also I have been asked to start evening exercise at Poole Hospital, However I have not attended yet as I’m a big coward. Oh well I know I must, and I will. Honest, I will, really!


Also I am about to start an NVQ 2 in I.T. This is supposed to be a 6 month course, but due to my also applying to do a 1 year course on CAD design I am having to complete it in 3 months. I am confident though that I can complete it on time, by doing a lot of the work at home. Unlike the environment of the college I can start and stop as I please and therefore do a lot more work than I would normally be able too. The plan is to complete the NVQ2 then do the CAD course then to immediately go back to the college, and do the NVQ3 then I will have the skills required to work from home. If however I find that I need more then this too is on offer and I am 100 % up for it. My goal is to get off of benefits as soon as possible, unfortunately it seems that that is going to be about 2 Years at the very least. However with hard work and other peoples patience I feel that it is very achievable. So I start the first course on the 13th September. All this has come about due to one hard working Lady called Denise Woodford, She was given just 3 hours to try to find some kind of job that I could do, by my local Job center. She and I got on well and she has gone out of her way to get me the training that I need, to move on. She is one of those people who you would either like or not get on with at all. This Woman has given me a reason to get up and is probably the reason I have started to add to this again. Many thanks Denise.


Also somewhere along the way I have met Social Services, and now have an Occupational Therapist. What a fine bunch they people are, they go

out of their way to help you, and will always try to find an acceptable conclusion to any matters you may be concerned about. As I have mentioned in the past, I have to sleep on a Reclining Chair, due to my back. Well mine had to be replaced as it was falling apart at not only the seams but everywhere. The whole structure was shot. I phoned my Occupational Therapist and asked him if he could help me get a loan from DSS to buy a new one. His answer was no don’t worry about that Ill have one sent to you and true to his word 2 days later my new electric rise and recline chair was delivered. I was made up.


However, unfortunately this chair was no good to me, as it made my back worse than ever due to it being the wrong shape. So I phoned him and he came over as soon as he could to measure me for another one. While he was here he also came up with the idea of a powered bed which is being delivered in the next few days. I must admit that I am more than a little apprehensive about laying down again after so long. But to be honest it is something I have only dreamed about for soooo long. So will it be OK, or not. Ill keep you informed.


Also I just had my 50th Birthday. I don’t Mind telling you, that, I was not happy to be getting old. However when the big day came, I actually had the best day of my entire life. The whole day was a truly wonderful experience. The long and short of it is, we are all getting older and with every day we live we are all getting closer to the long lay-in…. I think that as you get older you realize that this is just another part of life. It is the part of life we all shun, and therefore all fear in one way or another. I can honestly say that I no longer fear it, just it’s manner. I should also add that I am not one of the Sunday Singers… I have just come to the conclusion that inevitability, is inevitable. You can quote me on that! So in the time I have left, I will not be pushed under the carpet, I want to be all I can be, and I will be. Yes I have to go back to school again, and now I understand why, you hear of old people completing Degree’s, They have come to the same conclusion as me, or vice versa. What I am trying to say, is, it does not matter what your affliction is, you must get up and start again. In fact you do not have the right to become a cabbage, and you do not have the right to give up. Most of us have Families, and if you do not have a Family then you have Friends, and if you have no friends, Email me, ill be your friend. These are the people who we need when we are down, not to fetch and run, but to lean on in order to get back up, don’t forget your friends, it is very easy to sit back and let the world just keep on turning without you, well soon enough, it will. So do as I have done and get out there . There are many people who want to help you, you just have to ask, and in my case I had to BEG the Job Centre to send me to see Denise, without whom I would still be sitting here every day feeling sorry for my self.


So as I bring this instalment to a close, I just want to say a big thank you to all those people who have helped me through these last six months.

6th Janurary 2011.

First let me wish you all a happy new year, and I do hope you all had a fantastic Christmas. I was a little unfortunate and spent the whole Holiday with a case of the Flu. Only now am I starting to feel a little better, and today is the first time in a month that I can honestly say I feel good. I have had to cancel my Hospital appointment with the Rhumatologist, and I am a little cheesed of about that as the last time I went to see her She gave me an injection of steroids, and for a time this made my life much better. However this did not last as I was supposed to attend regular Physio appointments. I am now so afraid of pain that im actually scared of these appointments. I think it comes from being in constant pain and, being mentally unable to talk myself into experiencing lots more. This is pathetic I know, but as these appointments get closer I find myself cowering in the corner, like a small dog at the Vet's. I am now a complete coward!

20th Feb 2012

Once again it has been a long time since writing on this blog, this is partly due to what has happened in the last year, and partly because i have got quite lazy. Lets start with what has happened. At the hospital I was asked if I would be willing to use a drug called Humira. I agreed and after many tests I was accepted onto the drug. This drug works by destroying your immune system and thus stopping your body from attacking it's self. This worked well for a couple of months, but then I developed an infection in my left leg. I went to see my GP about the infection, since the hospital had told me that if I got ANY infection I should go straight away to seek advice and I MUST STOP THE INJECTIONS immediately. Well when I went to see my doctor he prescribed antibiotics, but also told me that I should continue with the drugs. This was in August 2011. 2 weeks later I now had the infection in both legs and I was almost unable to walk. I went back to see my Doctor who was away on holiday. I saw another Doctor who gave me a double dose of antibiotics which seemed to be doing the job. However he only gave me one weeks supply and when I went back my own GP put me back on the original medicine. I had stopped using the Humira by this time of my own accord. A few days later I got a call from the hospital due to missing my appointment and got a right telling off because I had listened to my Doctors advice and had not stopped the injections straight away. I went back to see my doctor after this call and told him what the Hospital had said. He then told me that he was the person I should listen too and not the hospital. In a nutshell I still have the infection in my right leg to this day and I don't see it going away in the near future. I am not and will not use these drugs again as it now seems that my life was in danger when I continued using them with the infection. The Hospital are great, but they don't see me every day its actually every 3 months, and I wont go through that again not for them or anyone else.

1st March 2012.

I went to see my Doctor yesterday and obtained some more antibiotics. The infection in my leg has started to grow again although to be fair, it's nothing like it was a few months ago. I was impressed that this time he seemed to listen to what I had to say, and suggested that I tell him which antibiotic worked better. So I am now on the very heavy dose of the one that healed my left leg in just a week. I am just hoping that they now go on to work their magic on my right leg.

I have a hospital appointment this afternoon, so we will see what they have to say about it all.

The extra picture at the top is how my legs looked with the infection at full strength.

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29th March 2012.

Well here we are again then. As i told you at the beginning of the month I got some more anti biotics, and that, I asked for the ones that seemed to do the job the first time around. This was probably a mistake as they have had little impact this time, and the infection has moved to my left leg again. Remember folks this is all because of what happened when I first got the infection.I now have swollen legs to the point that I can't get my shoes on some days, and when you consider that I have to buy 2 sizes too big anyway since I cant bend to put them on, you start to see just how bad things have got. Also I am now unable to stand still for more than just a minute or so, and walking is also worse. I am now starting to get stiffness in my shoulders mainly the left one, and my chest is tightening up due to my rib cage becoming fused to my spine and breast bone. This becomes apparent when I cough or sneeze. That just really hurts. My eyes are starting to cloud over in the mornings, although this soon clears once I'm up and about. I am still only able to sleep for 2-3 hours at a go. This is due to being unable to get comfortable and it means that I have to sleep 3-4 times a day. To be honest this is becoming intolerable since I am not able to make any plans. On the plus side the pain in my left knee seems to have gone unless I stand for too long.

Ok so to look at the positive stuff for a moment. I have just created a web page for a friend. This can be seen at.... http://davyscatering.99k.org/

Although I did this for him as a freebee I am hopeful that it may start the ball rolling toward my starting a business of my own. Also I am hopeful that I will get at least a level 3 in IT. specializing in web design. This would be a dream come true.

Also before I go I have a web site all about me and this disease. It is a place that you can go for information it's a little more in depth than this blog can ever be. Find it at...

http://www.ankylosingspondylitisandyou.co.uk

I hope you all enjoy the site. There is a contacts page for any feedback you may have and any editorial contributions that you might like to make will be considered for inclusion on a new page that I am working on. So please go there and read, and most of all tell me about you. Any problems my email is:- cabcaster@hotmail.co.uk

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30th March 2012

The following has just been sent to my inbox by "MEDIFOCUS digest alert. I thought you should see it.

Practitioner.2011 Dec;255(1746):21-4, 2. Early diagnosis crucial in ankylosing spondylitis. Malaviya AP, Ostor AJ.

Source

Rheumatology Clinical Research Unit, Addenbrooke's Hospital, Cambridge.

Abstract

Ankylosing spondylitis (AS) is an inflammatory autoimmune disorder that predominantly affects the spine. If untreated it may cause significant morbidity. Early diagnosis is particularly important as newer therapies are able to contain this condition and even induce remission. AS affects about 0.2-0.5% of the population. It is at least twice as common in men and most often manifests in the third to fifth decades. It is estimated that up to 5% of patients with chronic lower back pain in primary care have inflammatory disease. Although only 1% of patients with HLA-B27 develop AS, 90-95% of patients with AS are positive for HLA-B27. Immune dysfunction is the hallmark of this condition and it may be triggered by infection. The primary site of inflammation in AS is the entheses, the sites of insertion of tendons and ligaments into bone. If the inflammation remains untreated, there is resultant fibrosis and ultimately ossification at the entheseal sites. AS should be suspected in patients who report back pain and stiffness with rest, especially in the morning, which improves with exercise. Although the condition affects both the sacroiliac joints, a proportion of patients report pain radiating into the buttocks which may be unilateral or alternate, particularly in the early stages. In addition to the spine, large joint synovitis may develop as well as features of entheseal involvement. New classification criteria take into account early sacroiliitis evident on MRI scan and allow a diagnosis to be made far earlier than was previously possible. A proportion of patients respond well to NSAIDs coupled with a structured physiotherapy and exercise programme. However, about half these patients need escalation to biologic therapy. Patients with a suspected diagnosis should be referred to secondary care in order to confirm the diagnosis and commence treatment.


Comments 8 comments

doc421 6 years ago

I suffer from the same disease. I am a Physician in the United States and my wife happens to be from England. I believe this is an excellent, well written, well thought out article. Although AS is not my specialty, feel free to contact me as I have suffered from it, and have STUDIED it for 21 years. I have also lectured support groups. I am constantly updated with the most current Medical news regarding Ankylosing Spondylitis. Thank you.


Andrew Aston 6 years ago

Hi,

Great article, thank you so much for posting. I'm a 37 year old male and was told 4 weeks I have AS, have had a bad back for around 6 years, the past two have left it's mark, can't even stand some days because of the pain.

Andrew

Andrew.aston2@btinternet.com


Newbie 4 years ago

I have been living with this for years and always thought it was something that would diappear as I continued to fight through it. After being diagnosed I spend alot of time excercising and eating the right foods. It gets worse but you gotta fight


Zach 2 years ago

Hi Roy!

I am current physiotherapy student, and I just wanted to tell you I found your blog extremely interesting and well written. I will be taking everything you have mentioned in my studies and hopefully be able to one help people like yourself.

Hope you're doing well.

Zach


Leila reed 2 years ago

I was browzing the net when I came across this site. I also suffer with severe ankylosing slondyitus it started just after my 27 birthday but by the time I got a diganosis and got too see a specialist the damage to my spine and neck was too advanced and I suffer in many other joints in my body because of this condition the pain is hell on earth ive never known pain like this its worse then giving birth. Trust me I know lol. I am unable to work because of how active my condition is an how stiff my spine and neck are I cant walk long distances and even small tasks have become huge challenges I cannot stand up straight and that for me personally annoys me the most. And socially this condition has had a huge impact. You have to adapt to another way of living and doing tasks depending on how much the condition as effected you physically. And then mentally and emotionally you can be effected by this or maybe its just cause im a woman an we are more sensitive or I am lol either way thats another battle. However I do not want people to feel sorry for me its a card I have been dealt like many other suffers out there and theres nothink we can do about the condition and how it effects us individually but for me i am not letting this condition win I am going to battle and I will never give up no matter how much pain im in or how little I can move morjority of the time there are people out there worse off then myself and I always remember that. And to the person who wrote this blog I can totally relate to your circumstances and I hope you get well soon or atleast your condition improves. Well done for writing and sharing with us keep it up. Regards leila


Jason 2 years ago

I feel sad for you mate I have as since I was 17 I'm now 41 I have one hip replacement i don't know if you know this the pain relief for your as is rubbish I use two take two Celebrex a day up to 12 tramadole and co-codamal in between then I was offered this new drug call ed humira and oh my god what a change I'm standing straighter can now turn my neck level with my shoulder it won't get rid of the as but it slows it down takes the pain away I'm now down to taking the Celebrex but maybe two-four tramadol no co-codamal and sometime I even forget the tramadol anyway good luck


Abhijit_kurne@rediffmail.com 21 months ago

Hi I Abhijit Kurne from India, 36 year old, I suffer the same, but I decided to over come on it. I studied 15 years on it. & simultaneously do small exercise to keep mobility. Some time I have/had so much pain I could not explain it. I start stretching as well as single bar stretching but slowly. Today I work / drive / sex i do all this thing without any interruption. If you people can think you can do. for that you should prepare your self .

I take Etrobax - 90mg tablet if i find more pain.

Today i do yoga as well as gym also & i found very much chang in my life style.

I any one have more stiffness in spine please consult your doctor

Dont do a heavy exercise it may be problematic .

AS is non curable but it is in your hand to stop the progress & and increase the mobility of spine.

This i write because of i want to encourage you people for good life style.


gepeTooRs 10 months ago

I have read so many content on the topic of the blogger lovers but this post is actually a nice post, keep it up.

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