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Fibromyalgia Community
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Avatar universal

No diagnosis - Firbro?

Hi everyone,

I've posted under Neuro but find myself here for reasons I've seen before...I, too, have been through test after test to try to find a diagnosis for a myriad of symptoms...Can you all advise me?

Bottom line - how do you find a doctor who "specializes" in Fribro/CFS?  I've experienced horrible fatigue for years - but docs all said, well - you have a lot of stress in your life (quadruplets, financial woes, crazy schedule, etc)...so just accepted this is the way it has to be.  A year ago, my body crashes - HGB was 7....was hospitalized and given blood transfusions, then iron infusions...GI scopes came up 0 for cause of blood loss.  After many months diagnosed with 2 kinds of Anemia - Pernicious and Iron Deficient.  Given Lupron (6 mos now) to induce menopause 'cause blood loss narrowed down to hemmorachic (sp?) periods.  Fatigue now debilitating...neuro symptoms including tingles/twitches/spasms, slurring, blance problems, etc.  Doc has been wonderful, testing anything we or others can think of - all negative for Thyroid, Addisons, Lyme, Rheumatoid, Sprue, other obscure diseases too numerous to list.  MRI of brain, ultrasound of heart, gallbladder, CV stress test...all negative.  All Neuro tests so far have ruled out MS, dementia, etc.  PT for ataxia seems to be helping some...but still have poor muscle control in legs (take stairs one at a time going down...up is okay).  Neuro did extensive Neuropsych tests, all came back fine.  PT's found ataxia, guarding, decreases motor planning...Neuro says she finds nothing her in office exam...says it's stress.  Argh!  Ruled out psych meds (Desipramine, celexa)...

Approved for disability under "fatigue"...Have been given Ritalin for energy but only benefit is that most days I am awake/alert all day without napping.  Fatigue comes and goes in intensity, but overall awful.  Finally, years ago diagnosed w/osteoarthritis in hip.  Now experience constant pain in hip, knees, right shoulder and occasionally jaw, wrists, knuckes.  Vision seems blurred, even with glasses - tho' usually if I concentrate can focus.

Mom (aged 65) diagnosed with Fibro a couple of years ago after years of being shunted to the side/considered neurotic with psychosomatic symptoms - tho' multi psych professionals wrote testamonials to say she wasn't crazy, depressed, etc., and cause must be physical.

Sooo....anemias are "under control" with treatment, yet symptoms persist...fatigue and now joint pain being the worst of it.  Where do I go from here?  Ready to just give up....really.

26 Responses
Avatar universal
One of my dear friends suffered from fibromyalgia and was just ready to give up.  She finally began seeing and feeling some real relief when she visited a holistic doctor who practiced natural medicine and homeopathy.  Of course, they treat the whole patient, not just the symptoms.  It amazed me how great her relief was.  There is some awesome info. on naturalcures.com.  Here is a link with some other info. as well.  I wish you the best of luck and I'm sorry for what you're going through.

http://www.eliminatefibromyalgia.com/fibromyalgia.html?hop=jumpmom2
http://www.beatfibroandfatigue.com/?hop=jumpmom2
http://www.stop-suffering-fibromyalgia.com/?hop=jumpmom2
Avatar universal
Hello.  I have had fibromyalgia for about 8 years now that I know of, and I can definitely empathize!  I went through many doctors and many incorrect diagnosis before finding the right doc.  The best thing to do is what you are doing now, ask around.  That is how I found out about my doc.  I see a Rheumatologist who specializes in fibromyalgia research.  He is with the University of Tennessee Medical Group of Doctors.  It would probably be good for you to do some searching for a research/teaching facility such as this and check out their rhuematology department.  You can usually view all of the available docs online with their credentials and what their special interests are.  If you come across one who lists fibromyalgia or CFS as their interests you are in great luck.  These are the doctors who will really understand you and your symptoms.  They also know all about the latest research being done and new therapies that are not yet approved or are about to be approved.  This is important as new information is being learned everyday about these disorders, and if you don't keep up you will be left in the dust.  Don't make the mistake of going to an elderly doctor who is very set in his ways.  He/She will probably treat you like you are crazy or depressed.  Also, if you find the right doc, they may be able to refer you to clinical trials being done in your area or other specialists that can help you in other ways.  Since fibro and CFS do effect so many different systems of the body, it is not uncommon to see several doctors for just that one disorder.  My doctor is referring me to a psychiatrist who has a special interest in fibromyalgia patients (especially how the neuroreceptors are being effected) and an internist who has a special interest in fibro patients (especially how to control the pain associated with this disorder).  I am also going to see a neurologist because I am having new symptoms that are indicative of MS.  The weird thing is I checked the website for the neuro clinic I am going to, and they have fibro listed as a neurological disorder.  The more research is being done, the more they are seeing that it effects you neurologically in many ways not known before.  It could be that after all the testing they tell me it is just my fibro manifesting itself in a different way, but it is better to be safe than sorry.  My doc told me it is not uncommon to have a whole myriad of tests in your record as a fibro patient, because you just don't know what symptoms are fibro and which ones are some other underlying problem.  Also, you may want to see a nutritionist.  They can help create a diet for you that will help to keep your fibro or CFS in check.  Certain foods can do certain things for your body (ex:salmon is great for cutting down on joint pain).  Sorry I am being so long winded, but I hope this info helps you.
Avatar universal
I also found it interesting that you had trouble with anemia.  I just had some bloodwork done and no flags came up.  However, my RBC level was at the very lowest end of the normal range.  I had never been told my levels were low borderline low.  I wonder if this is somehow connected?
Avatar universal
Jenn, you mentioned seeing a doc @ Tn. Univ. R U from Tenn? UI live between Nashville & Chattanooga. If u r please let me know.
Big Orange Fayray
Avatar universal
Yes, I live in Memphis, TN.  UT has a campus here and they also have merged with Methodist healthcare here, so all they have a great teaching hospital downtown.  My rheumatologist's office is attached to that hospital, and he does clinical research for UT Methodist when he is not in the clinic.  For this reason he is hard to get into see because he is only in the clinic maybe one or two days a week.  He took me on quickly because my mother was already a patient of his, and he was very interested in treating a mother/daughter pair with fibro since they are still researching whether genetics plays a large role in this disorder.  His name is Dr. Benjamin Wang.  Let me know if you have any other questions.
Avatar universal
Jenn, I am sorry 2 hear that u & ur mother both have this "terrible" illness. It seems to me that if Drs. had recognized this years ago instead of telling all of us we were "faking" all of our symptoms maybe more could be done now so we could have a life. To make matters worse, those of us who have worked all of our lives to have the American Dream & have it jerked out from under us & denying our disability. we r ready 2 lose everything we own because I'm not able to work because of this illness". I pray that the study you r n will benefit ALL that suffer from fibro. Sorry to vent!!!
Soft hugs & Prayers,
Big Orange Fayray
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