Misdiagnosis of Fybromyalgia - please read

If like me you have spent months and even years suffering with Fibromyalgia, felt completely helpless and even felt disspair I really recommend seeing a rheaumatologist about Sjogrens Disease.

I was diagnosed with Fibromyalgia 2 years ago. I saw 2 chiropractors, referred for physio twice, seen a gastroenterologist and had multiple blood tests, x-rays, MRI's and ultrasounds. most of my treatment was self funded as my GP refused to refer me to a pain clinic or a rheumatologist. My GP constantly told me that I hAve Fibromyalgia and need to accept it and manage it with pain killers.

I struggled to accept that Fubromyalgia is my life and that I will never be able play on the floor with my son, but not feeling supported by my GP I paid to see a rheaunatologist privately for a second and final opinion.

2 months later and further extensive tests the rheumatologist diagnosed me Sjogens disease which has many similarities to fibromyalgia. I was put on medication and now feel like a new person. I can get on the floor and play with my son, I'm no longer in daily agony, I wake up and go to sleep like a baby, my fibro fog has gone.

I really wanted to share my story with you in case anyone else is not being taken seriously by their Gp and possibly being misdiagnosed as I was.

To think I still could be living in constant pain had i not seeked help feels like a blessing.

I know this might not be the answer for all of you but misdiagnosis does happen and I wouldn't want anyone to suffer because of ignorance (from your healthcare professionals).

Wishing you all a pain free evening my fibro friends.

36 Replies

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  • Thanku so so much so interesting I've had m.e and polycystic ovary plus migraines and depression for over 10 years I've had numerous operations for my cysts and now only have 1 ovary I was Tod last week that as I'm nearly 39 I have no chances as I only have 1 ovary my hormone levels are too high and I've had bariatric surgery and lost over 14 stone to help. I'm under St. George's at tooting for migraines who want to give me endermethacin to help for pain but it is all to much now. My poor body I've done everything to the book and still unwell. I've had a lunbar puncture with only a small amount of fluid taken and he thought I should be ok and not have m.s but wasn't sure???brain scans show 3 cavinomas (enlarged brain vessels) does anyone else have this?? I've had depression too as well as hormones high. My pain is legs wrists joints headaches /migraines urinary incontinence at times anemia and terribly in pain as too much activity means one day I'm in bed for ages. There seems no one listens but u know something is wrong. My left side has weekness the hospital had even questioned if I had a mini stroke? I get pins and needles down my left side??? Anyone have the same. I hope all pain sufferes are ok and managing and we all need to stick together and help each other. Try sand sleep well lots of love xxx

  • Hi Twinkle0411

    I am so truly sorry to read this, and I have pasted an excerpt form *NHS Choices below about cavernomas. Many of your symptoms match what NHS Choices say about them:

    *Symptoms of cavernoma

    A cavernoma often doesn't cause symptoms, but when symptoms do occur they can include:

    bleeding (haemorrhage)

    fits (seizures)

    headaches

    neurological problems, such as dizziness, slurred speech (dysarthria), double vision, balance problems and tremor

    weakness, numbness, tiredness, memory problems and difficulty concentrating

    a type of stroke called a haemorrhagic stroke

    The severity and duration of symptoms can vary depending on the type of cavernoma and where it's located.

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

    All my hopes and dreams for you

    Ken

  • Ken

    Thank you so so much for the link it truly means slot. I'm so very lucky to have this group I would be lost without it.

    Just knowing there are people in similar situations make it more a less alone feeling. I'm hoping the sun will shine for us all and we all have a nicer pain free day keep smiling peeps thanks again Ken 😎😎😊😊x

  • Hi Twinkle0411 thank you and good luck my friend x

  • Hello Twinkle

    I'm so sorry you are going through so much.

    I have fibro, depression and chronic migraine but not the other conditions you mention: as part of migraine I do have one sided paralysis attacks and weakness, in my case these are hemiplegic migraine auras. I have migraine auras of one type or another almost every day. Sometimes the symptoms can last for hours, days, weeks. I have had stroke like events which are seizure like. Pins and needles and tingling are also frequent aura symptoms for me.

    There can be a lot of overlap of symptoms with different neurological problems.

    You are definitely not alone, I really feel for you and I hope your journey through this will result in some better hours for you in time.

    X

  • Hi there Balkis,

    Many thanks for your reply that truly means a lot to hear that too. It's very hard at times when you get all the symptoms with other conditions you have as well.

    This forum is fantastic hey. I'm not sure about you but even my left eye turns inwards when I've done too much and my eyesight has deteriorated on the left too. I know it's all the conditions we have it's just knowsing sometimes what medication to take and then what it's doing to other parts of ur body hey. I hope ur pain free or as well as can be today??? Gentle hugs x

  • Yes, neuro vision and eye problems are horrible. They do mostly revert, but it's not much consolation at the time as they can sometimes be scary and disorientating. I think we need to rest asap when we notice those symptoms.

    Yes, I understand, wanting to understand what is causing which symptoms etc is important. We can't even try to help ourselves unless we know, so I get that. It sometimes also helps deal with the anxiety around symptoms too, knowing what causes them.

    In a predictable flare up here....just waiting for it to break. There will be many others sharing that experience today.

    Here's to a day that is better for you Twinkle.

    X

  • Balkis

    Many thanks and a better day for you to. I'm not to down at the minute about things. It's frustrating that's all sometimes but I think we all share that feeling. I hope your day goes well and be gentle on yourself. Gentle hugs x

  • Thank you for the reply Twinkle. I'm so sorry to hear about all of the problems you are experiencing. Sometimes it feels like you just want life to give you break. I truly hope you find the answer to you problems if not at least for a more pain free life xxx

  • Bless you sweetheart. I am so sorry for xxxxx

  • Thank you lizzy-m it means a lot. I hope your managing to get some sleep sweet dreams gentle hugs x

  • Hi Ltals

    I am so genuinely sorry to read this my friend, and Sjögren's syndrome can mimic many of the symptoms of Fibro. There are a few members on the forum who have been diagnosed with both Sjögren's syndrome and Fibro.

    I am however, genuinely delighted to read that you are feeling much better with your new medication.

    I have pasted you a link below to the NHS Choices cache on Sjögren's syndrome.

    nhs.uk/Conditions/Sjogrens-...

    I want to sincerely wish you all the bets of luck, and please take care of yourself.

    All my hopes and dreams for you

    Ken

  • Thank you Ken. I will of course still be on the forum as i don't think I'm completely out of the fibro woods yet, but glad to have some relief from the pain.

  • Good luck my friend :)

  • Hello,

    It's not great to be diagnosed with any chronic disease, but it is great that you have a definitive diagnosis, that the drug management is working and that you feel better and have improved quality of life. That is worth its weight in gold.

    I had read that Sjogrens can often come back negative in tests, even when present, and its common for it to take years to be diagnosed. It's good to raise awareness as it is apparently the second most common rheumatic disease, but hugely under diagnosed.

    Keep well and enjoy.

    X

  • thank you so much for sharing your news. I agree and think we all worry about correct diagnosis etc. it's so wrong that to get your news you had to self fund.

    honestly sometimes it feels as though we are taking pot lock it's like taking your car round different garages to be told different info. it's just this is our bodies and we do rely on the proffessionals x

    so happy things have improved being able to play and get on your child's level is so important good luck xx

  • Thank you so much Lou59.

    I'm sad I had to self fund but with the relief I now have in my life it's been worth every penny..... even if I have to pay it for the next 3 years :)

    I hope you also find relief from your fibro pain and don't have to visit too many garages :)

    Xx

  • Thank you Ltals xx

  • Hi have just read on this. Has smptons like fibo. But does not mention burning pain on skin.happy you got right dignoice x

  • I didn't have burning on the skin either but as I understand it not everyone with fibromyalgia does get the burning. I wouldn't rule anything out until you are sure your healthcare provider is being thorough.

    Xx

  • Glad you've got a result now, that's why you should always push to be referred to a rheumatologist to confirm the diagnosis as GPs are not specialists in any one subject, good luck

  • So happy you got finally sorted.....so not right you had to self fund.....i could not self fund myself....as many cant and it must have been a burden for you to do it that way to...

    ....wishing you a continued painfree life and lots n lots of active fun with your lovely son

    Big cyber Huggies

    Lolly x

  • Just outa interest ......what are the tests for SS ?

    Thanks

  • I'm sorry to hear you suffered so long with an incorrect diagnosis and paid for the investigations. It seems that the easiest option seems to be the thing doctors go for first diagnosis without further investigation. I only got further tests as the ones I had kept coming back with nothing. Luckily I had a very good GP who sent me to a sports injury consultant. He diagnosed CRPS which ironically didn't show up on NHS choices at the time. It seems to be down to a GP that will listen properly who isn't under financial and time pressures that gets the best results. GPs are just that... general practitioners and should defer to experts in their fields so they should refer when they are out of their depth. Unfortunately financial issues and waiting times sometimes stop this happening. Ironically it will have cost much more for you to see your GP over the years. I hope you are now getting the right treatment and managing better x

  • I complete agree that GP's should refer people to the right places and in fact I don't think something as serious as fibromyalgia should be diagnosed by a general practitioner anyway. I should also add that my diagnosis was made by a suggestion I made to my GP based on reading up about my symptoms on this forum - not real route of elimination except blood tests. Everything else was privately funded. And although I couldn't afford it I just knew I needed help.

    It's a sad time that we have to rely on private healthcare these days to get the right treatment.

    Xx

  • I was so lucky that my GP had funding to send me to a private hospital to see the consultant who diagnosed me. Unfortunately he has left the practice so I am having to "train" a new one 😁It seams that fibromyalgia could be a cover all diagnosis for the symptoms that present mainly as neurological without much further investigation. I've seen quite a few conditons where it's a secondary condition, as in mine. If we suspect any symptoms are outside of fibromyalgia then we need to keep pushing for further investigations.

  • I'm firmly convinced that a lot of fibro diagnoses are incorrect and the result of lazy doctoring and I cheer for the poster here who has now been properly diagnosed and treated.

  • I couldn't agree more. The worst part is many of us live in pain because of someone else's lack of empathy and laziness.

    I hope you too find some relief for your fibro

  • Great that you feel better.

    What medication are you on?

  • I'm on a medication called hydroxychloroquine

  • Despite a scan on my hands showing definite inflammation my blood tests have again come back completely normal! How come? So happy for you to have been released from this Fibromyalgia Hell.

  • Hi Lizzy,

    Over the last 12 months I have had approximately 5/6 rounds of blood tests all showing normal........until I saw the private rheumatologist who extended the blood test and found the anti body in my system that causes sjogens disease.

    I would check that you have been tested for ANA - this is the blood test that showed my disease.

    I hope this helps

    Xx

  • Thank you so much. Xx

  • I too have had several scans of my hands showing inflammation and my blood tests always show inflammation but because the rheumatoid factor comes back normal they say the inflammation is down to my weight gain. They use this as an excuse to discharge and dismiss me and say I have fibro so they dont have to bother.

  • I feel once they eventually do give you the diagnosis of Fibromyalgia they will blame it as the reason for everything and anything, Kindest Regards xx

  • Post Lyme disease syndrome.

    Thank you for this information. Before Christmas I happened to look at an article entitled "Fibromyalgia or Lyme disease". About 8 years ago I was bitten by a tick in springtime. I had the bite, still fresh on my foot until late autumn, and had the radiating ring of pinkish brown spread out from it. It left the patch in the middle white. I have been told that it was quite likely to have been Lyme disease. However, because I knew nothing about it then, I didn't go to the doctors or get treatment of any sort. I developed all sorts of symptoms, but put them down to flu's that my husband must have had already because he didn't develop them. Then I was diagnosed with Fibromyalgia. If I did have Lyme, it may have resolved itself as a live virus, and so there seems little point in getting a blood test (it is a lot of messing about to go to a hospital and get a blood test sent off to England, and I am not being encouraged at all to do so, since there is little that can be done about post-Lyme syndrome) so I am not certain either way. However, if I do have post Lyme syndrome, there is a possible chance I might get better slowly, whereas the fybro is not likely to cure itself. So, though there is no sign of it happening yet, I am hoping to be pleasantly surprised one day.

    All my love, and good luck for a surprise recovery to everyone with Fibromyalgia/something else.

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