Help with determing if i have fibromanagia

Hello. I have read a few post on here and i really think i have fibromanagia but no dr will listen to me. I go to pain mngt every month for 4 herniated disks spinal stenosis and a tear in my lumbar area. In the past few months I have been getting extreme pain like needles and shocks throught my feet going up my legs. Sometimes its unbearable to even bend my toes. I have tried to talk to several drs about this and asked about fibromanagia because a friend had it. No one has done anything about it and i have asked for blood work and a new MRI just to see what the heck is wrong. Its very miserable and hard to sleep. Please tell me what I have to do or what options I have to find out whats happening. I can not stand the pain even though I take 10mg oxycodone and soma it is doing nothing. Any advise would help please

16 Replies

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  • Hi Jessamuels0730 When I first became ill all the the doctors were having a hard time diagnosing this condition. I was told there are no test that will show fibro in the body. They diagnosed me based on the symptoms eg the shooting pains, burning, pain like I have never experienced all over my body.

    If the doctors are not helpful change doctors untill someone listens to you.

    I also have RA getting a diagnosis took forever. I had to change hospitals twice until I found consultants that took me seriously.

    I hope you will find a doctor or consultant who is kind and willing to help.

    take care

    Ebony xxx

  • Hi there is no test for fybro it's a case of ruling every thing else out.I was subjected to every blood test possible I have underachievement thyroid also which has similar symptoms. Was sent to sleep apnoea clinic had physio etc wen all else throws no results you will then diagnosed. I have cfs also which has similar symptoms. ..process of elimination I'm afraid also no treatment for it.have to try various meds to get some relief. Amitriptylene helps me to sime extent.hope u find an understanding doctor x

  • To get a fibro diagnosis you need a referral to a rheumatologist and you need to have the following (taken from the NHS website)

    For fibromyalgia to be diagnosed, certain criteria usually have to be met. The most widely used criteria for diagnosis are:

    you either have severe pain in three to six different areas of your body, or you have milder pain in seven or more different areas

    your symptoms have stayed at a similar level for at least three months

    no other reason for your symptoms has been found

    The extent of the pain used to be assessed by applying gentle pressure to certain "tender points", where any pain is likely to be at its worst. However, this is less common nowadays.

    When I was diagnosed you used to gave to gave pain in shoulders elbows, hips, knees, ankles, legs. Plus other symptoms. Was 12 areas apparently now it's only 6.

    I was diagnosed even though no pain in shoulders or knees but I had pain in arms and legs plus I had m.e.

    Not all my symptoms fit fibro, I think I have another neurological disorder plus auto immune issue. But I can't get anyone to help me. They just say it's fibro.

    I know that since birth my organs and muscle and tendons and other parts of my body are all out of place my tendons are where muscles should be my oesophagas is slightly out of place making general anaesthetics dangerous unless anethetists are fully aware. Recently found out I have an issue with my nose my septum is out of place and I need an operation to fix this as it effects my breathing.

    When ever I have an MRI it seems to mask the real truth. Recently tore my cartilage in my knee just by standing and twisting it slightly. MRI showed tiny tear.so surgeon said op is up to me with the type of tear i had he couldn't understand the pain I was in. And surgery was up to me he wasn't sure an op would change the pain it was the usual some people have tiny tears but feel a lot of pain while others have huge tears and feel nothing. Making me feel like pain was made up.

    When he did the surgery few weeks later he said my tear was huge one of the worst tears he had seen. I've had similar things said about elbows and wrists always worse than scan shows.

    I think my issue is genetic as well as probably having fibro, but all I get told is I'm special and no one is looking into it.

    Sorry for rant at end, I hope you have soloution soon get a referral to rheumatologist. Or pay for first private consult with one.

  • Hi Jessamuels0730 Never give up make them listen to you

  • I think you have some type of neuropathy going on there is no test as of yet for fibromyalgia

  • Sounds like you got a lot going off in your back.. I think looking back now that ive had Fibro for years & it wasnt diagnosd. Is there another GP within the practice.?

    Sharon

  • So hope you get some help and relief soon....it is a struggle to get a diagnosis as we all know..

  • Sorry to hear your in such pain, you must get some help. Most GPs don't like diagnosing Fibromygelia and will refer you to a Rhumetologist at the hospital. So I would ask GP for referral. What's going on with your spine does sound complicated and obviously the nerves from the legs pass through it. Could it be sciatica from a pinched nerve? I had this down one side and had to have three bits of disc trimmed. But this was twenty years ago from a parachute accident and before I'd even heard of fibro!

    Another thing you may want to look at is Restless Leg Syndrome which I now have and are similar to your symptoms.

    Took me four years and two nerve operations on ulna nerve in elbow and corporal tunnel in wrist before I was finally diagnosed.

    In the end I made a lot of fuss via sending letters. DRs don't like paper trails commenting on them and can be quite motivating in my experience. Firm, polite and assertive wins the day over demanding, accusing and cross even though the pain makes us feel that way.

    Best of luck

    Patrick x

  • Hello Jessamuels0730 and welcome to our friendly fibro forum where you can find, advice, support, help and information.

    Have you seen our Mother Site fmauk.org ? Here you will find a wealth of information, including guides and links.

    Unfortunately there is no one test for fibro, the diagnosis tends to be given when everything else is eliminated.

    I can understand your frustration, and it is difficult when you have other conditions too, but I am afraid you may need to have a bit of patience.

    If you feel your doctor is ignoring you or dismissive of your symptoms then you can ask for an information pack to be sent anonomously from our website.

    Good luck!

    Kay

  • Hi there

    Welcome to the forum :)

    Just from the point of internet safety, I was wondering if you have your own name as your username? If so, it may be a good idea to change it something that you can't be so easily identified by.

    If you would like me to let you know how to change your username please let me know and I will be more than happy to help.

    Getting a diagnosis of Fibromyalgia can take many years. Some of our members have even waited decades.

    Is there a different GP you can see at your surgery?

    I understand that it is a frustrating time for you, but unfortunately there is not much more you can do, other than to pay privately to see a Rheumatologist.

    Wishing you less pain and more peace

    Lu x

    Administrator

  • Hi all and welcome Jess :)

    I was just wondering Lu if you or friends on here know if you have to be referred by your doctors to a Private Rheumatologist or can you just refer yourself?

    Thank you :)

    Carol

  • Hi Carol

    You have 2 options. If you want to be seen on the NHS your GP has to refer you to see a Rheumatologist.

    If you wish to see one privately I believe you can organise that yourself.

    Hope that helps.

    Lu xx

  • Thanks Lu :)

  • So sorry to hear your having difficult times . it is often a challenge finding a doctor who understands/ knows about the complexity of fibromyalgia .have you been to a rheumatologist .I think they tend to diagnose this condition . unfortunately it can often take a number of years of going back and forth to g.p. . it may be worth while keeping a daily journal of your day to day experience with health issues .it may help when key questions / points need discussed at appoint ends . stay positive and hope you find a doctor who is sympathetic to your struggle day to day . its a dreadful condition . embrace your good days and enjoy and embrace the bad days best your able .

  • Hi Jessamuels0730 welcome to our wonderful forum ☺ I'm sure you will come to find the forum invaluable in chatting to others who are going through the same experience as you, talking to others at different stages of their lives with Fibro and learning from their experiences.

    It does help with the whole process and I wish I had found the site years ago. I have had Fibro for nearly 30 yrs and I'm still learning about it, like we all are.

    I see you have already had lots of good advise, so i just wanted to say Hi & look forward to chatting with you on the forum.

    Peace, luv n light

    Jan ☺

  • Hi Jessamuels0730

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I am so genuinely sorry to read that you are experiencing this issue. I have to admit from what you have described it does sound more like a nerve / neuropathy issue?

    I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

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