What is Fibromyalgia?

Posted , 6 users are following.

Although I've been diagnosed with Fibromalgia, I'm not actually sure what it is. 

Can anyone helpin explaining what the diagnosis is as I also have other probems, therefore I don't really know The difference. Is it my nerve pain, my muscle pain or my joints?

Can anyone give me something more specific please? 

 

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  • Posted

    I feel the same I'm now awaiting re assessment through my local pain clinic if you can referred to your local clinic they are brilliant and put you in touch with professionals who can help you understand and get the correct meds and support it's taken me nearly 2 years to get to this stage it's a long hard process but keep fighting until you get the services you need good luck
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    • Posted

      We don't have a Local pain clinic. I've been to see a neurologist as they think I've got something wrong with my brain. I've had scans on my spine, neck and brain I'm just waiting to here back from them. 

      But I will try find a local pain clinic because lets be honest a GP can't really give you the correct pain medication as there not really trained on fibromyalgia are they? 

      I'm really interested in knowing what it is so I can research how to cope with it. 

      When I type it in to google, the same thing comes up and it doesn't really help to be honest. 

      I thought talking to people who have it, I might get a better understanding. 

      I was in the teritorial army but I was medically discharged after my accident. Then I went to train as an engineer fixing cars and engines but I've now had to give that up as my body physically can't do it. 

      Fibromyalgia has ruined my life so far, Im currently doing kitchen work. I don't have a carrer I can follow. 

      I'm Going to fight this, and I will get help even if I have to travel. 

      I hope all goes well and you get the right treatment and everything your entitled too..

      Good luck and thank you for your help 

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  • Posted

    Hi kayleigh:

    Sometimes it is hard to define.  But I looked up some resources and this is what I found.

    What is fibromyalgia?

    Fibromyalgia is thought to be the result of overactive nerves. It is a condition that results in chronic widespread pain and tenderness all over. Here’s exactly what that means:

    “Chronic” means that the pain lasts a long time—at least 3 months. Many people experience fibromyalgia pain for years before being diagnosed

     “Widespread” means that it is all over the body. However, many people with fibromyalgia feel their pain in specific areas of their body, such as the lower back and neck.

    “Tenderness” means that even a small amount of pressure can cause a lot of pain

    When I first experienced which was decades ago, doctors at the time really didn't know much about it.  I am talking about 40 years.  A lot has been done to know more about this condition.  I don't believe is classified as a disease as you cant really explain what causes it.  Doctors have theories though and now they are understanding more and finding ways to help patients.  There are new drugs coming all the time, advertised on TV and computer.  Since they are new, there are so many precautions listed that you wonder about the risks.  To me, I do wonder so I try not to think about them.  As long as  I can stay healthy enough with nothing entering in my body as being serious, then I just disregard it.  I just dont want to take that chance. On the otherhand, if something can be life threatening, then I would reconsider.  Fortunately, fibromyalgia is not life threatening by itself.  But you do suffer from it with pain and lots of it.  That is something you want to control.  Yes, I do believe in pain meds if it works.  I follow the doctors orders and tell them if it works or don't.  So far, many of the prescribed pain meds don't work as I would want it to work.  Now my doctors have determined that medical marijuana might be the way to reduce my pain.  Fortunately it is legal in our State.  You still need to be certified as if you go to another State where marijuana is not legal, you can get in trouble with the FED's.  One of the setbacks is the expense but it could be what prescription pain meds cost as well.  You have to evaluate everything.  Since I have nerve damage, I know there are other resources to look into such as nerve stimulators.  There are other newer methods as well.  Whether they all work or not, remains to be seen and the doctor has to know what they are doing.  /so trust is a major factor.  That is why there are trials to see if it will work. 

    Yes, it can time to get to where options are tried and dont work.  Doctors are not readily going to tell you that to do it as they have to try other means to lead up to it.  It can take a year or two and have a good doctor to do it.  It took me over two years before I had my nerve stimulator put in and frankly I am not totally satisfied with it.  Now I am thinking of taking it out and put  in a newer advanced one.  I dont know yet.  The cost is very high and hopefully you have good insurance to cover the majority of it.  Overall, my trial and permanent nerve stimulator cost $200,000 and all I had to pay is $175 for each surgery.  Whatever the doctor and insurance company settled was up to them.  I have a different insurance company and if it would cost me a lot out of my own pocket, then I would just say forget about it.  I would just have to treat it for as little pain as possible.  So I hope what I said helps you in what you are dealing with.  Have a good day or night whereever you live and stay well.

    mel

     

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    • Posted

      Hi Mel, 

      Thank you for explaining what fibromalgia is, I know a little more about it than I did.. 

      Wow that's a long time ago, You must have been suffering for so long. I think it good that there starting to learn more, hopefully one day in the future they'll know whats causing it, and a way to cure it so there's no more suffering. I'm from the UK and we don't really have any prescription tablets advertised on TV or computer, although I was they did.  

      There are so many risks when taking any medication as there full of stuff not really desined for the body. I have family and friends who tell me there not good for me and that I'm a 'prescription junkie' My best friend looks at everything that goes into anaything so she's constaly nagging at me to get of them, she says there more harm than good. But people don't understand the pain and how I depend on those chemicals to help me get through the day. 

      I do myself believe in medication as majority of the stuff does work. 

      I have tried marijuana and it does help, unfortunatly it is completly illegal here where ever you go and they won't let anyone have it medically. I would say give it a try as it does help, it also give me the best night sleep ever. Although if my back isn't supported, like sitting down, it can make the pain worse asi jult alot and get shocks. This is due to my core muscles being no good. I could get it quite easily as I only live in a small town in the country, it's 3 miles long from one end to the other. It is expensive though. 

      I've never been told about nerve stimulators. but I will reaserch them, we don't have medical insurance here as we have the NHS which is free medical care, although you can't just demand anything. 

      I suppose I will just have to keep nagging them. After all I'm only 20 and I have many years to sorts a method that works. I'm glad I've found out now rather than later. 

      How do nerve stimulators work? I'm interested to know more about them and how they work. Wow, that's a lot of money, it's a good job you have medical insurance. It's great you didn't have to pay that much, although it sucks you had to pay anything at all, it's not exactly your fault. 

      Do you get help with living costs?

      Thank you so much for taking the time to tell me all this, its has been a huge help and I really appreciate it smile 

      Look after yourself and please stay in touch, I would like to know more. 

      Wishing you well 

      Kayleigh x

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  • Posted

    The way I see it is overactive nerve endings.  I also have Fibro, and the doctor gave me Lyrica.  It is a miracle drug for me.  It seems to calm the nerves down so you can have a better life...I hope this helps...
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    • Posted

      hi carole how much pregablin (lyrica) do you take im desperate for something to help calm the nerve pain which is so bad now i have it all over my body 24/7- stinging,burning,itching and thats on top of all the other pain! ive just started this at a very low dose 25mg at night no effect at all yet
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    • Posted

      Thank you, I've been told by a few people to try it so I will definatly ask my GP about it. 

      It's helped hughly. I'm also interested to know how much Lyrica you on? 

      once again, thank you..

      Wishing you well 

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    • Posted

      Hi kayleigh:

      Just to butt in, I asked a couple of my doctors about it but they gave me no real  response.  All they said that it is new and cost lots.  Me being on medicare, it still would cost me so is it worth it?  That is a question I have to ponder over.  I know a lot of so called designer drugs, the big Pharma's charge sky high and depending of what tier level it is at, determines hpow much you will pay.  I know, I am doing without the newer drugs because of this.  If it is not in the formulary, then they wouldn't pay any of it.  Believe me, many good drugs are not in medicares formulary.  I guess if you are rich or well to do, it doesn't matter.  Thats my input so I will say good night and be well.

      mel

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  • Posted

    Hey kayleigh:

    This is the third time now that I am typing as I lost two before.  When this happens, the moderator is notified as it picks up things that are not normal when sending messages such as broken links, etc.  I am not worried about it as I didn't do anything wrong.  It just gives more work to the moderator.  rolleyes  The icons here are limited but on my tablet, I have a key where I get so many different icons, it blows your mind.  biggrin 

    First of all don't feel stupid as what you have, is not your fault.  What causes fibromyalgia, who really knows.  I thought it was some part of an autoimmune disease because the nerves are affected.  Yet, fibro is not considered a disease as of what I heard or been told as there is actually no cure for it.  Because it is still unknown, then you just have to treat it as a condition and try to live with it the best way possible.  I know that sucks but what else can you do except taking meds to help relieve the pain and not all work.  Now, I have a nerve stimulator in my body which provides a low frequency buzzing feeling which can be annoying.  It only affects my legs but not my lower back which I wanted.  Now there is newer nerve stimulators and even surgical procedures that can be done.  I have read many reviews of patients that it either worked or gave them problems.  I was thinking about the new nerve stimulators such as the Nevro F-10 but at least there is a trial to see if it will work.  Still the trial is expensive and with my new insurance co., I don't know what my out of pocket expense would be.  I know the last one, I hardly had to pay anything.  It was done on an outpatient facility for the trial and in the hospital as an outpatient where they have better control if something should go wrong.  At least you know that you can be admitted if need be. 

    You mention about memory problems.  I have them as well.  It is hard to say what happened to you that would cause this.  I wonder if this started after your accident and somehow, injured your spine, brain, etc.  Maybe due to a concussion as well.  Over the years that you didn't have memory problems, I couldn't say that it is do to fibromyalgia itself. Meds can probably have an effect as well as what I have which is obstructive sleep apnea where you stop breathing several times during the night cause some brain cells to die.  As you know brain cells cannot be rejuvinated and you have to save what you have left.  I am on a medication called Donzipil which is supposed to save whatever cells you have left.  I don't want to have dementia.  To lose my memory would be devestating for me.  Maybe I wasn't the most intelligent person in the World but I still was somewhere closer to the top of the belll curve.  cheesygrin  Mentioning that try Lyrica, I don't know much about it.  Some patients say it really works.  I even asked my doctor about it.  He didn't tell me whether he would try it on me or not.  One time I was put on something called ?????.  See, I can't remember what it was either.  I do know this though.  Several times I blacked out and one time fell to the kitchen floor, hitting my head and went to the hospital for 3 days.  So, you really never know.  I think it is important to read the inserts of any new medicine that you get.  At least you will get a pictures of how it affects other people in clinical trials.  I generally make a point to do so.

    So, there it is.  I'm not a doctor so natually I can't advise.  All I can tell you is how something affected me.  Hope what I said helps some.  Take care and hope to hear from you again.

    My best to you

    mel

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  • Posted

    It's basically a dysfunctional nervous system so it encompasses all of those things but I have noticed over years and as I'm learning more in physical therapy that joint pain is often parading as joint pain but is really muscle and nerve pains. Apparently those of us with fibro have the ability to have muscles so tight it makes professionals balk.

    It has been my experience and what I have observed in others that if you concentrate your medication and therapy towards the nerves it makes it more manageable though.

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