How were you diagnosed?

I am interested to find out who has been tested and for what conditions? I have heard a lot about dr's having to rule out other illnesses such as Lupus and Thyroid problems from other people, but I was only given one blood test to check for arthritis markers and then diagnosed with Fibromyalgia. I'm pretty sure it is Fibro that I suffer from, but maybe it could be something else as well that the dr's just haven't tested for? Any thoughts?

Thanks

12 Replies

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  • I have had a whole range of tests. All of them, except for the ESR and CPA *? fibro fog can;t remember if thats its name or not. anyway they go together and they came back very high, though no investigation was done any further. I was diagnosed by rheumatologist in 1996 without any blood tests. I was diagnosed by the doctor palpating 11 of the 18 tender areas, they were all very painful.

    That was it. Wonder if it is the same as everyone else, for years I wouldnt accept the diagnosis, so asked for many different tests.. the only one I havent been given is an MRI or the conductivity test..(whatever that is!)

  • Hi i had blood test for lupus arthritis ect also had a brain scan for ms was diagnosed 9 years ago after trnder point tests also have osteo arthritis

  • I started with a really really bad migraine that wouldnt go away and i ended up in hospital for 6 weeks, they did tests to see what it was thought it was a tumor and mengitus and eventually decided it was all in my head so sent to see a shrink.. the shrink said i had real pain so sent me to see a neurologist.. by which time the pain in my legs had started and the migraine still hadnt gone away and the neurologist sent me the rhemotologist who did some tests and said it was fibromyalgia! I am still under that rhemotologist now he has also diagnosed me with hypermobility syndrome and M.E and has been prescribing me various medications etc. he is great and i am so glad that for the shrink that believed me in!

  • had a few blood tests still having them, just to rukle out anything else but diagnbosed myself and dr agreed with me as i panicked at first thought i had alzheimers but was just fibro fog!

  • hi I would go back to the doctors there is more test needed just cose you have FMS does not mean you can rule out everything else ... please go back to the Dr the reason it takes so long is their no test so i had ecj bloods xrays and bone things they rules out everything and it took a long time ...

  • I would get a copy of your tests from your doctor.

    If it really was only one blood test done, that's not enough testing at all. But going for a blood test once can involve getting lots of tests done.

    You should be tested for any signs of autoimmune or inflammatory conditions (fwiw Lupus or Rheumatoid Arthritis can not be ruled out by a negative blood test though). ESR and CRP should not be high with Fibro.

    You should be tested for nutritional deficiencies, especially anaemia, B12 deficiency and vitamin D deficiency. Magnesium deficiency cannot be tested for in a blood test, but taking a good quality, well tolerated supplement for 3 months (probably not available on the NHS), noting any improvement and then stopping it and noting any change, can help illuminate this issue.

    Fibro does cause a range of neurological symptoms, but anything specific or atypical (e.g vision loss, paralysis, tremor, convulsions) should warrant a referal to a neurologist. Severe migraine also warrants a neuro referral in many cases.

    You should get gastointestinal problems, including Coeliac, Crohns, etc ruled out if you have any GI symptoms. This requires a referral to a gastroenterologist and tests including gastroscopy, colonoscopy, etc. Food intolerances should also be ruled out with a proper exclusion diet. Infections and parasites should be ruled out. Unfortunately, the simple, single stool sample test typically done on the NHS through your GP is not very accurate or in-depth when it comes to diagnosing systemic Candida, lack of probiotics, etc.

    If you have a history of clotting problems or signs of potential clotting problems (stroke, heart attack, DVT, miscarriage, complicated pregnancies, migraine, etc) then Hughes Syndrome needs to be ruled out or in, by a specialist.

    Myofascial pain syndrome (which many people have as well as Fibro but that requires different treatment) can only be checked for with a physical exam by someone specifically qualified (a physio is your best bet on the NHS).

    Hypermobility should be checked for, alongside other factors like skin involvement that may indicate Joint Hypermobility Syndrome or Ehler-Danlos Syndrome. Hypermobility is a risk factor for developing Fibro, but you need to know about it so you can manage it.

    There's probably more, but you get the picture. If all the possible differentials haven't been checked for, then the diagnostic criteria for Fibro (1990 or 2010) cannot be used. With the latest criteria, the patient also needs to be able to distinguish between any symptoms caused by any other condition and symptoms that may be caused by Fibro.

  • I began at the doctors who listened to my symptoms and arranged for me to have an appointment at orpington hos by a rhumotoligist. She tested me for painful areas on the body and, as i had very weak legs at the time, checked my muscles. She then sent me away with medication which helped for a while (amitriplin and floxitine and ibuprofens ).

    I was on these two years then realised one day that they were controlling me, so i stopped taking them and mind wise feel so much more in control. I force my self to walk up and down the stairs every day, as many times as pos to strengthen my legs. I used to pull myself up by the banasters. My legs still ache alot but i push my self. The less you do with this illness the worse you get. I now stick to ibuprofen and paraceamol together if i have a really bad day.

    I've also been to guys hos and had the same kind of tests there. I get terrible numbness in my hands which is carpol tunnel too.

    I think by relaxing your mind like if your constapated and on the loo and your mind is thinking of all the days chores etc, your never end up going to the toilet, but if you clear your head and relax your mind the tension goes (sorry if it sounds a bit crude but only way i can think of describing it).

    I would like to try a yoga class and meditation, I think this would help.

    I'm just waiting for the day when science has a break through !

  • ESR, CRP, Lupus, Arthritis, tumour markers and then the pressure points test, but I think that was the consultant making a point - when he peeled me off the ceiling after the 3rd pair he stopped and said he knew the rest would be the same.

    Mine is stress related and was trauma triggered (motorcycle accident).

  • Hi

    i had 2 mri scans, numerous blood tests, saw a neurologist etc. Once they ruled everything else out like MS, Lupus...they told me it was fibro. I've just started taking gabapentin along with anti depressants & anti anxiety pills. I think my fibro was triggered 3 years ago when my husband was seriously ill in intensive care for 3 weeks...after that lower back pain and massive anxiety developed, over the years after the fibro developed.

  • Hi Guys, my diagnosis was made by a Rheumatologist 8 mths ago. After years of knowing there was something other than OA wrong with me. It was suspected that I could have RA as my sister at one point, but blood tests proved negative. I have an under-active thyroid for which I take thyroxine daily.

    I know I've had fibro for many years..... not sure of the trigger. Many traumas...accidents & lose of loved ones....all I know is I've definitely become worse over the years. I live in hope though, and am very pleased to have found this forum.

    Wishing you all a pain-free future, Annette.

  • my friend told me i mite have it so went to docs and basically said theres nothing we can do but it is fibro stuck me on co codamel which arent even strong and have been struggling ever since

  • hi stormlaw ii was diagnosed after 10years of suffering wide spread pain memery loss headaches not being able to sleep ti was taken in to hospital had a muscle biopsy/lumber punture/ nothing showed up with those 2 tests but when i was further excamined my muscels were so tender and sore thats how the consultant made the diagnois iv now been living with fibro for 28 years iv learn how to pace my self and i swim twice a week hope this helps you from demelza x

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