- Diseases, Disorders & Conditions
Fibromyalgia the docs know nothing...
Have you ever had the feeling of complete weakness and being rundown, every bone in your body aches and hurts. Sometimes it's painful to move and you could sleep for days....
More and more people are being diagnosed with Fibromyalgia a chronic pain syndrome that makes you feel all of the above, it only seems to effect women.Included in this cruel disease I'm going out on a limb and disagreeing with the docs saying it's just a syndrome.Because it can also attack your immune system, if someone sneezes near you guaranteed you will come down with a full blown cold. If somebody has a bad cold you will come down with the worst case of Flu.People also suffer with a few other ailments its rare just to have Fibromyalgia on it's own there is Irritable Bowel Syndrome, Chronic Fatigue Syndrome, myofacial syndrome rheumatoid Arthritis and many more depending on the severity of the Fibromyalgia. For instance Fibromyalgia suddenly smacked me round the head and floored me after I gave birth to my youngest daughter. I popped a disc out in my neck and a disc in my lower back leaving me having severe back spasms. Also muscle spasms that were quite violent, I was given the gift of Carpel Tunnel Syndrome too which is where you're hands go numb I kept trying to help my husband make up the baby bottles couldn't hold anything properly and ended up pooring half a kettle of scalding hot water over my hands. I didn't feel it, you don't have any sensation in them at all.
The things the Doctors are saying brings on Fibromyalgia (FMS)
- Cold Weather Conditions on a winters day Fibromyalgia suffers find themselves stiffer in a morning and it is almost twice as hard for them to get up and going in a morning, and suffer more during the day from the symptoms. Pain intensifies when it's cold making it harder to exercise all you want to do is sleep if your lucky and can.
- Stressful Situations Bereavement, financial situations, divorce, are big on the list others include work situations, family conflict, disability, and not being able to do things,
- Insomnia Makes things worse, so when you suffer with Severe Pain no sleep intensifies it to unbearable pain. You can't rationalize things such as normal everyday circumstances.
Doctors often look dumb founded when asked questions about Fibromyalgia because not a lot is known about the condition. Millions almost billions has been poured into research in America and the U.S is forever testing medication and theory idea's to help beat the condition.
Research is now showing that more and more pieces of the puzzle are being put together and the FMS studies show that fibromyalgia suffers have different pain receptors in the brain, some may take pain killers and find they don't do anything even heavy prescription pain relief this is because hormones and receptors in the brain are basically sending the wrong message to the rest of the body. Doctors and consultants in pain clinics are often prescribing Oxycontin a type of morphine base tablet on top of co codamol and other pain relief medication as well as Oxynorm Immediate release morphine as much as every 3 hours. A usual person would be flat on their back almost unconscious from taking this. Fibromyalgia suffers would be grateful if this would give them a break through pain relief slot of an hour. The things you could do in an hour - me i'd spend it cuddling my family, bonding with our baby and playing with the dog that spends hours trying to cuddle up to me making me smile when I don't want to.
Truth is even upon visiting a top rheumatologist recently for help as a referral from the pain clinic I attend. The Doctor started with what I already knew "I'm afraid you have Fibromyalgia and it's not a good thing to have, because we don't know that much about it...." The guy continued to say he wanted me off all the medication I currently take and off crutches which unfortunately due to giving birth,slipped disc and muscle spasms has left me hobbling on 1 crutch. He went on to say I was choosing the disability of the condition by being lazy. I let him ramble he reeled his essay off while filling in the paperwork, while never once looking up at me and blah de blah de blah.
Until I had enough and explained to the Doctor I couldn't use my hands even to turn a tap, I couldn't stand when helped I would drag each foot behind me like a dead limb. I learnt to walk with 2 crutches and now I change nappies, give bottles and help feed our baby. Unfortunatly I seem to have hit a dead end and am now on 1 crutch and hobble. I didn't appreciate this guy giving me a lecture about you can cure fibromyalgia by stopping medication fighting against your own body and exercising then wella you are fit and cured.
He contradicted himself - they don't know anything about FMS but I have to stop all meds and exercise more. Is the guy trying to kill me!!! I can walk and talk due to these meds that a fantastic Neurologist put me on.I'm extremely lucky and have a physio and an O.T that come once a week and help me, go through small exercises, a healthy diet and help me to cope with memory lapses which are called "Fibro Fog" you could ring someone and forget who the heck they are and why you were phoning. Even worse take medication then 10 minutes later forget and take it again.It's dangerous and unfortunately I have a severe case and now have a carer 24 hours who administers medication during the day and night logging it strictly I couldn't do without my husband or the rehabilitation team without them I would be a humble mess. But it is an important part of so called recovery not to be bullied into overdoing it with exercise not meaning jogging round the block twice by exercising. Constantly moving muscles etc so you don't go stiff and pain sets in. know your own pace and PACE YOURSELF. you can do yourself more harm than good going overboard. Adjust activities to your pace to prevent setbacks and flareups. The best way to deal with what you have been dealt with is to minimize the symptoms and accept life. It could be natures way of telling you to slow down and stop worse things happening later in life.
There are more and more support groups popping up around the country and people you can chat to regarding everyday problems you may encounter and get upset about, believe me it will happen. I miss eggnog at Christmas or having a glass of wine at home on a Saturday night. Dining out as a family somewhere, my current aim is to get to eat at McDonald's and make it a family occasion.
I am content with hobbling around on 1 crutch it's important to me to accept that fibromyalgia is a big part of my life so I can move on and enjoy what I've got providing I have the support and unfortunately with deep regret the medication that allows me to eventually move in the morning, making me able to communicate and participate in family things, as simple as feeding the baby changing nappies. Sitting at the breakfast table in the morning before school. Helping with homework etc. I won't be able to play football,netball etc But after my own setbacks I have learnt my own boundaries.
Maybe in a few years we will catch up with the U.S and get the recognition that fibromyalgia patients get over there including a little respect and helpful advice and treatment.
Support us and take us seriously... Fibromyalgia by Brownearth12
Support from Fibrohug
- Welcome to Fibrohugs, your Home of Fibromyalgia Support! - Home
Fibromyalgia Support, News, and Research. Offering safe and comfortable interactive communication with other FMS and chronically ill patients., The Mission Of FibroHugs is to offer a place where persons with Fibromyalgia can find understanding, knowl
Fibromyalgia Association UK
- Fibromyalgia Association UK
The UK charity site for everything you need to know about Fibromyalgia, including UK Support groups, pain management, exercise, legal information, research, and claiming benefits.