IS YOUR FIBROMYALGIA AND DOCTORS A PAIN?

1. 52

   livingwithbipolarposted 12 years ago

   I used to be a healthy person, this fibromyalgia is a pain (LITERALLY). What I want to discuss is, is that why aren't more doctors knowledgeable and Empathetic about this disease? My question is, why in the hell would I go to the doctor and tell them my whole body is in pain and that I can barely move at times, they look at you like you are purple with blue dots?  Oh, don't get me started on the pain management doctors, they look at you like you had 2 xtra arms and 2 xtra legs, and then you have the doctors that just don't believe you and you are in severe pain suffering.
   I cant find any support groups or a great doctor to help me with my pain, It would be nice to find other people with Fibro, ( dont get me wrong I dont want anyone else in pain) it would just be nice to have support thats all) I'm frustrated, I just need some meaningful advice.

   replyreport
   1. 80

      ladybugJudyposted 11 years agoin reply to this

      I suffer with Fibro myself  and you are right people look at you and think or some even say "you don't look sick" !  Well if you have never suffered from this disease then you have nooooo idea the hell we live  every day!  not just once in awhile.

      replyreport
   2. 52

      SannieBposted 11 years agoin reply to this

      I started a new discussion on this very topic in the medical specialty forum! I should have probably posted it elsewhere, like in this one but it's too late now. Dealing with doctors and fibro is definitely a huge pain!

      replyreport
2. 59

   knolyourselfposted 12 years ago

   I have fibro for at least ten years now. Slight pain all the time but not that bad. I wear lots of clothes, heavy fleece on bottom and usually four or five layers on top. I am in a recliner, can't sit up much, and that or laying down
   is the most pain free. Since I quit eating beef and been eating a lot more
   vegetables, it has been much better. I never let myself get depressed. I do this by constant creativity. I would suggest holing up in the driest and warmest room in the house. Dampness is a killer.

   replyreport
   1. 52

      livingwithbipolarposted 12 years agoin reply to this

      Hi knolyourself, I try and eat more chicken and I do eat a lot of veggies. I cant even work out due to the pain, so I'm gaining weight which sucks. I just wish I can find a wonderful doctor even if its just one, maybe I need to move away from VA, the doctors are terrible here.

      replyreport
      1. 82

         donotfearposted 12 years agoin reply to this

         You live in Virginia?  The state is endemic for Lyme disease and it mimmics all symptoms, including fibro.

         replyreport
3. 59

   knolyourselfposted 12 years ago

   livingwithbipolar:
   I can't live east of the Mississippi. I would last about ten minutes with that humidity. So if you could move to low humidity state, it might be of great help. At least a visit and see. Forget doctors. There is no test for fibromyalgia, so they tend to dismiss it like scientists do god. Do your own research. Google has most everything. The trick is the key words. And unless a doctor is schizophrenic, they probably don't have a clue to what it is. So their solution is just proscribe drugs.

   replyreport
4. 89

   mistyhorizon2003posted 12 years ago

   I am not allowed to post links here, but as my mum suffers from this I did look into it and wrote a hub on the subject. There are actually a few drugs that look like they make a difference to sufferers, although not all doctors seem to be aware of this. One paragraph I can quote from my hub (although there is lots of other info in the article too) that might help is:
   
   "Medications that are showing promise include:
   
   Pregabalin (Lyrica).This is the first medication, which has received FDA approval specifically for Fibromyalgia.
   
   Duloxetine (Cymbalta). This was the second medication to be approved.
   
   Milnacipran (Savella). This was the third medication to be approved.
   
   Other FM medications are currently being developed, and may soon receive FDA approval to treat fibromyalgia."

   replyreport
   1. 52

      livingwithbipolarposted 12 years agoin reply to this

      Hi Mistyhorizon, I am on Cymbalta and Lyrica and they really dont help.

      replyreport
      1. 89

         mistyhorizon2003posted 12 years agoin reply to this

         Perhaps you could try the third drug then (Savella), it might work if the others haven't. To be honest from the research I did when writing my Hub it sounds like very little helps, but you never know, different drugs work for different people.

         replyreport
         1. 52

            livingwithbipolarposted 12 years agoin reply to this

            thats true, Im starting to think im gonna just have to live with the pain, but the pain makes it hard to function. I'll talk to my doctor about it.

            replyreport
            1. 73

               Jillian Barclayposted 12 years agoin reply to this

               Fibromyalgia is horrible and unless you find a rheumatologist, you will not fare well. I know this because I have fibromyalgia. The pain can be unbearable and if your disease is not brought under control, the pain and chronic exhaustion can cause disability. It is trial and error, as far as treatment is concerned. It took me more than a year, even with a rheumatologist, to lessen the pain to at least a degree where I could function. You may always have some pain. You can also experience flares, especially in times of great stress.
               
               Rest assured, you are not alone. Most rheumatologists say that a third of their patients have fibromyalgia. And your regular doctor has NOT been trained to treat fibromyalgia. The reason that many of the meds have not worked may be that your doctor has not prescribed the right dose.
               
               Some cases, in addition to fibro meds, also require heavy-duty pain meds. As your condition stabilizes (there is hope), the need for the heavy-duty pain meds will go away.
               
               I wish you the best, but also cannot stress enough your need to find a rheumatologist, a good one.

               replyreport
5. 0

   ashelladyhawkeposted 12 years ago

   I, too, suffer from fibromyalgia and have for over 15 years--back when knowledge wasn't available to docs about it. It may take a lot of searching, but a GOOD rhumetologist is the first place to go. He will (1) diagnose problem accordingly (2) either decide if he's going to treat your pain or if you need to go to a pain clinic where they decide what to prescribe for pain.
   TIP: When you go to the doctor, whether your primary care or specialist regarding any of your problems, if you're hurting bad enough, wear your pjs. I do. Have been to many a doc visit in my pajamas. Seeing how you really are gives them better idea that you mean what you say. You're not sitting there all pretty and feel like sh*t. You feel like it & you look it too. That tells doc a lot.

   replyreport
6. 73

   Mighty Momposted 12 years ago

   So sorry to hear you're not getting needed relief from your doctor. But not overly surprised.
   My son went through a nightmare of seemingly undiagnosable pain (clusters of pain). Unable to locate a source of the pain, his HMO doctor dumped him in the chronic pain management "program" and tanked him up on narcotics. It was a bandaid that didn't even cover the wound.
   He ended up discovering the mind-body connection, learned meditation, and is now pursuing a career in naturopathic healing (herbal remedies, healing diets, etc.). So he's essentially healing himself.
   
   First thought that came to my mind was have you tried alternative, natural treatments?
   Here's a few that might help...
   http://www.everydayhealth.com/fibromyal … x#/slide-1
   
   I also have a good friend who does work with chronic pain. I believe he, himself, has chronic pain. Don't be put off by the emphasis in some of these references to addiction. Plenty of pain management resources.
   If you like I would be happy to talk to Steve Grinstead and ask him for some ideas specific to fibromyalgia.
   http://www.addiction-free.com/resources.html

   replyreport
   1. 73

      Jillian Barclayposted 12 years agoin reply to this

      Excellent advice!
      Dear livingwithbipolar,
      Have hope---there are natural remedies that are helpful. Everyone's body is different- worth a try. You are new to Hubpages- let me tell you, Mighty Mom is one sharp lady!

      replyreport
   2. 82

      donotfearposted 12 years agoin reply to this

      Very good advice MM!!   Excellent...many of my friends with Lyme disease are on a natural regime that really helps.  One must be very dedicated to getting well, but it works.

      replyreport
7. 82

   donotfearposted 12 years ago

   If you've been told you have Fibromyalgia, I would take a second look, my friend. The fact you have been told you are bipolar may be a symptom of something else.   Many many cases of Fibro are actually Lyme Disease.  I've been studying this for 2 years, since I came down with Lyme.  Lyme is the most misdiagnosed disease in this country!   Mistaken for chronic fatigue syndrome, lupus, MS, even ALS.  The test for Lyme is less than 50% accurate and is faulty.   I'm giving you the information because I have  heard many stories from people just like you who were misdiagnosed for years, come to find out had chronic Lyme disease.
   
   I can't send you directly to my hubs about it, it's against the rules.  But I can give you a link to more information.  I'm very serious when I tell you that you that most people don't even remember getting bitten by a tick.  It's serious, I know from experience.  look at this movie trailer for Under Our Skin.  You can watch the whole movie for free on Hulu.
   
   http://www.hulu.com/watch/75584
   
   http://www.ilads.org/

   replyreport
8. 77

   psycheskinnerposted 11 years ago

   I would suggest finding a doctor with a specialty in pain or neuronal disorders,  The treatment options are varied and there is a lot of contradictory data.  IMHO a holistic practice or crossover homeopath/MD might be better at taking the time to make a full treatment plan with you.

   replyreport
9. 78

   cathylynn99posted 11 years ago

   the kind of specialist most likely to know about FM is a rheumatologist.

   replyreport