Curious...How many still doubt their diagnosis?

Discussion in 'Fibromyalgia Main Forum' started by nice2meetu, May 17, 2006.

  1. nice2meetu

    nice2meetu New Member

    How many of you still doubt your fms diagnosis?

    I do wonder sometimes if the Dr. missed anything while diagnosing me.

    The reason in part is due to the fact that my panic is so horrible and yes there is daily pain, but sometimes the other symptoms like dizziness, balance, vision, etc. seem worse than the pain.

    I was checked for Lupus and RA, and that was clear.

    I walk like a drunk sometimes and I catch myself trying to hold onto things while standing, in fear of losing me balance and falling.

    I just wonder if its really MS or something. My mom, God love her, still doesn't get it.

    Her answer is: Well I don't have it, how does the Dr. really know? The reason she doesn't understand is that when I clean I am wiped out the next day, I cry and the pain is awful.

    I am also going through a nasty divorce and it has taken a toll on my health. The stress etc is really bad for me. But stress is everywhere in life right?

  2. fibrohugslife

    fibrohugslife New Member


    I am sorry to hear of your complications with a divorce and I know the stress of that will majorly affect you body tremendously.

    Stress is in life all of the time but there are issues and situations that are more stressful than others.

    I feel like you, I lose my balance a lot and crash into the walls, and furniture.

    I am not sure what meds you are on as they may be a contributing factor. I have learned that for myself without the meds I am the same way.

    If you can maybe find another doctor for a second opinion.

    For myself I am finding I having more CFS related issues than before, but then sometimes in the day FMS takes over and they both dominate my body.

    I will be seeing a pain specialist and will try to work myself through the county hospital to see if I can get a new diagnosis because I just feel that there is something more than the Fibro/CFS/ and IBS. I have been feeling that way for the last year, and I need to see what else is going on with me. So you are not alone.

    Many hugs

    [This Message was Edited on 05/17/2006]
  3. mom4three

    mom4three New Member

    Wonder if it is something else.
    I have so much pain and so many other sx that are not your typical fms..

    I really think I have something much bigger and I am super sensitive to what is going on with my body that I think I feel it before they can dx it. Or before it shows up on their diagnostic test anyway. I don't know maybe I could just be searching for something more definitive?
  4. jenni4736

    jenni4736 New Member

    I have similiar symptoms too.

    My doc actaully told me to expect that another auto-immune could show up. He said that most people with auto-immunes seldom have "JUST ONE".

    No one knows our bodies better than ourselves. The right doctor will check things out when new symptoms arise. If he doesn't want to ...ask him to do it to "reassure you".

    If he still won't do it, it's time for a new doc. I have 3 appointemnts this week. If we find anything, i'll post an update to you both so you might have a lead on what to look at next.

  5. Jennyflower33

    Jennyflower33 New Member

    oh big time. i think i have a pituitary tumour or ALS. im seeing a neurologist friday. ive already seen an endocrinologist.

    is CFS an autoimmune disease then? i thought it was a mad virus or bacteria and fungal infestation or soemthing...
  6. Cromwell

    Cromwell New Member

    I think this thought goes through my mind a whole lot, especially when I get these weird things going on that just "pop up".

    I seem to get into a flare, then I come out of the flare with a whole new set of stuff going on, one thing gets better another takes its place.

    I get the dizzy thing, though it has eased considerably since I took antibiotic for some reason.

    I am able to do some stuff at the moment, even go shopping at craft store, do a few paintings, but the constant neck pain I get makes me upset as I thought I was out of a flare now this tight muscular arthritic thing has kicked right in.

    I think part of the way I think, for eg I was up at 3.00am reading the Merck Manual to see what else it all could be, scaring myself stupid,(yes looking at MS and ALS and neck cancers) is because I am left in the lurch by doctors, who when they DO diagnose, sound as if they don't really believe it, that it is not something that should be so bad etc. I get the impression they agree I have it, almost to appease me get me out of the room!

    Wakemeup, I have those disc issues you related, too, but the doctor told me everyone over 50 has them, yet I don't see all these old people walking around gripping their necks!(LOL)

    It is common with us all really. I still am pointing to frintol lobe stuff cuasing us to feel pain more than others, and there is a new magnetic treatment out(not quackery) that does a non surgical sort of leucotomy. They are using it to even treat mental illnesses successfully.

    I can buy into this idea that some of us may have weird pain receptors, as doctors are always telling all of us that they cannot understand why we are in so much pain.

    Love Anne C
    [This Message was Edited on 05/17/2006]
  7. TxSongBird

    TxSongBird New Member

    I have recently had ever medical test known to man (at least it feels like it) and everything else was ruled out. I have had this for 10 years and same Dr. so I know that I have Fibro as he is the Dr. who gave me the original diagnosis and has recently ruled out anything else.

  8. Jane_Canuck

    Jane_Canuck New Member


    yes I am doubting my original dx of fms and cfs.

    I was just told I had osteoarthritis in my hips and neck, as well as posssibly gout. I am waiting for the gout results as I had a lab friday.

    With where all of these symptoms show up I keep wondering if it is arthritis or fms causing the issues.

    I have been saying if i get the arthritis pain under control then I bet everything else will settle too.

    HAGD Brenda
  9. heathnicole

    heathnicole New Member

    I too- just found out Friday that I had a pitutitary tumor and I am worried. Why aren't the doc's worried about that. My doc didn't seem like he cared that much.I was wondering if you could help me more with that situation. Any info would be great.
    I do have a copy of my labs and it was a small one .. but still a tumor so whats the deal?
    Thanks and god bless
  10. springrose22

    springrose22 New Member

    There is tons of information online about Lyme disease, CFS, FMS, etc. Marie
  11. Greenbean7

    Greenbean7 New Member

    The staggering walk is mentioned as an MS symptom.

    Have you had an MRI to rule that out? That is one of the first things my neuro did.

    I doubt my dx on my good days (few as they seem to be any more!). I often wonder if it is just a back problem or muscle problem or bone problem, etc., etc. Hard to believe all these symptoms could be related!!

    I got out of my car on Mother's Day and nearly fell over from dizzyness. Then I had that drunken stagger walk all the time I was in the store.

    They have one of those fast check out areas where you scan your own groceries and pay with a debit or credit card. When I was trying to work it the girl that oversees them came over to help me. I think she thought I was drunk. I just couldn't figure out what I was supposed to do and since I was staggering around she was probably wanting to get me out of the store!!

    I have great doctors and I usually don't doubt them, but there are days, all in a row, where I can hardly walk. Then I remember to trust them because they are right.

  12. suzetal

    suzetal New Member

    They found 5 pinched nerves in my lower spine and some cysts growing at the base of my spine. Also Scoliosis.

    Right now I'm sitting here and my whole back is on fire on the inside.And it hurts so much I will not move until DH gets home to help me to bed.

    I also have sciatica SP.Who knows what else is going on????

    My 4 doctors are awesome and I know I'm in for more test in a few weeks.Not sure what yet but there working together all 4 of them.

  13. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    I have now, or have had all those symptoms. I've been able to treat some of the symptoms by addressing nutrient deficiencies though.

    You can probably correct your balance and gait problems by taking pantothenic acid, which builds the neurotransmitter acetylcholine. This is crucial for muscle nerve conduction, and various other things, and deficiency can cause many of your symnptoms, like sore, burning feet, bad memory/mood, etc. I get really clumsy and cranky w/out 500 mg 2-3 times a day. A multi or B complex never contains enough btw.

    I wouldn't worry taht your condition is "more serious" than FM. FM is plenty serious and all your symptoms can be part of it. The problem is, we are so conditioned by the medical community to thinking there isn't much more to FM than pain and depression. And yes, sometimes the many other symtoms of the syndrome are worse than the pain, so it's almost always something w/ me and FM.

  14. sherri_baby

    sherri_baby New Member

    Just thought I would add that you may be having problems with myofascial pain syndrom as well. I think if you google this you will find some of your symptoms listed there as well.

    Good luck,
  15. jenni4736

    jenni4736 New Member

    Sorry , I was really thinking about why we question this so much. I had to post again.

    I think that the fact that there isn't a specific blood test to say "YES" you have FM is the very reason we question it.

    It is hard for humans in this day and age (in these RICH COUNTRIES of PROGRESS) to believe that there is something that we can't see...that we can't touch...and we really can't completly fix.

    It is the reason we have trouble with our families and others around us. They can't see it... and heck WE question it ourselves some days.

    We are in a society that believes that attitude and pills can fix everything. I think a good attitude helps tremendously, but it won't cure us....and the pills.....LORD the PILLS. They gives us one med. and that causes something else. Then they want to give you a pill for that problem.

    I do believe I have FM but I believe I probably have another auto- immue as well. They seldom travel alone it seems. Maybe some day we will have our test to firm up our diagnosis..until then....



  16. Hope4Sofia

    Hope4Sofia New Member

    I question it primarily because we haven't run very many tests yet. But I have a good primary care doc who is lining me up for a lot more testing over the next several months.

    Two inconsistancies for me are:

    1. All the men on my father's side are symptomatic.

    2. My labs indicate chronic inflammation (high Sed and high CRP). Supposedly FM doesn't cause inflammation so what's up with that!?!

    I believe FM is a strong possibility (along with CFS) but I'll feel better when we've ruled the others out.

    One thing doc did say is that MS is always on the table with FM since it takes a long time to show up in tests as well - and the symptoms are so similar. UGH.


  17. Gly

    Gly New Member

    nice2meetu, I didn't doubt my diagnosis and almost died because of it. I just had a pacemaker implanted 16 days ago.

    I had traveled to the hospital for another surgery and they couldn't do it because they discovered I had total heart block. I was monitored and admitted to the hospital that day.

    I thought the terrible fatigue and pain in my legs (from lack of oxygen) was due to the fibro. I thought I had had every test to rule out anything else. I had never heard of bradycardia (slow heart beat) or heart block so I didn't think to request an ECG.

    I don't have the same symptoms as you have, with panic and balance problems, etc. I'm just saying that sometimes it's not the best thing to assume that all your symptoms are due to fibro.
  18. Cromwell

    Cromwell New Member

    sweetie, I hear all you say, and I truly sympathize, but I just had to LOL when you say at the end, "I only owned 5' (ft) heels before this" - I know you meant inches, but I had this vision of you towering over the headache doctor in 5ft high heels. I thought serve him right!!! Not laughing at you, but at the thought of that.

    I make typos all the time (don't we all?) and I noticed on one of my posts I had changed someones name into a very rude word.

    Love and hugz and sorry you had that long ride for nothing.

    Love Anne C

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