Discussion in 'Fibromyalgia Main Forum' started by Bunchy, Jan 26, 2007.

  1. Bunchy

    Bunchy New Member

    Hi all,

    I have been a regular here for a while trying to help others and asking questions myself. I am here because I need support but I don't know if I belong here but I don't belong anywhere else either. I seem to have a unique illness that no-one else in the world has got!

    I have come to the end of my tether. I have suffered SO MUCH.

    So far (and I have been sick and progressively getting sicker over time for 18 years) I have had lots of tests and seen lots of top specialists.

    Positive test results:

    Weak positive anti smooth muscle antibody
    Weak positive ANA
    Weak positive Rheumatoid Factor
    Liver granuloma (not active now) discovered on liver ultrasound
    Lesion in part of my spine discovered on MRI (told it was "non-specific")
    Brisk reflexes
    High sed rate several times, a bit lower now.

    Doctors and specialists have all lost interest and told me to just live with my condition. They have no answers as I do not meet criteria for any known illness.

    This is long but if you can please read the following which is my symptom history and let me know your thoughts.

    I would be very interested in the views of anyone who is in the health profession and their opinion.

    Rapidly losing hope, dignity and all the rest.

    Here is my history - please help if you can, Love Bunchy x



    New onset of extreme fatigue in head (as if I hadn’t slept for weeks)
    Generalised achiness and sometimes tingling all over
    Felt terrible all day if tried to get up early – ill, achy and exhausted
    Swollen, painful glands in neck (88-90), armpits (91-93) and groin (93-95)
    Cold hands and feet
    Sensitivity to temperature extremes
    Areas of skin exquisitely painful to touch occasionally
    Occasional excessive thirst
    Swollen fingers upon waking
    Alcohol intolerance
    Vertigo – type symptoms (December 90)
    Sensation of low grade fever and slight temperature at times

    NOTE: I had Glandular Fever 3 months before this started and a minor operation.
    This first phase improved after a flu virus in 1991 but I remained quite ill


    New onset of chronic severe nausea (like severe travel sickness), unusual stomach cramps, loss of appetite and diarrhoea (unrelated to food) associated with severe aching ill feeling, rubbery feeling legs and painful calves and sometimes a “squashed” feeling in my head
    Extremely hot, throbbing, stinging and painful hands and feet esp. in bed and after food or when exposed to heat.
    Night sweats and chills
    Extreme drugged feeling and feeling very unwell upon waking up
    Pressure headaches and chest pains (98-99)
    Sensation of not being able to draw breath (year 2000)
    Hot, achy, sick and dizzy spells in middle of night – felt as if delirious and about to throw up and have diarrhoea
    Standing and walking causes pain, pressure and stiffness in back and legs followed by severe “ill feeling” all over
    Gradual onset of pain, throbbing, burning and unbearable pressure feelings in back and torso when sitting upright and on hard chairs, anything that isn’t foam ie doesn’t “bounce back” and isn’t reclined.
    Often feel “battered”, bruised and sore all over
    In severe spells, feel as if poison or acid running through my body
    Need to eat and drink at certain times immediately to avoid feeling worse
    Low body temperature
    Unpleasant smelling menstruation (better with use of broad spectrum probiotic)
    Permanently chapped and peeling lips
    Occasionally feel extreme internal pressure and as if body and head will explode – go very red and get bloodshot eyes when this happens but blood pressure is normal

    NOTE: This phase started after a period of time when I tried to work full time and got extremely tired and also severely overheated during that particular Summer.


    New onset of extreme “CNS sensitivity”:
    Unusual pain and electric shock sensations all over followed by severe “ill feeling” upon lying on anything other than a soft mattress
    Severe internal buzzing, burning and pressure in torso and up spinal cord upon sitting – also feel “strangled” inside!
    Trembling, buzzing stomach muscles in certain sitting positions
    Episodes of body rigidity followed by buzzing and trembling all over
    Crawling feeling in leg muscles and also hip and torso pain when sitting in some positions. Sitting upright feels as if I am being strangled inside.
    Even more severe general “ill feeling” all over
    Severe heat intolerance – feel as if about to explode, severe pain, ill-feeling and disorientation and head feels “detached”
    Stomach symptoms worse than before
    Standing/sitting problems worse than in second phase
    Too much talking and/or noise around me causes fatigue and confusion.

    NOTE: I’m not sure what caused this phase although it happened after severely overheating again and simultaneously trying to come off Sulpiride. I did improve over time after about 6 months of severe symptoms.

    Most symptoms are still present from all of the above phases to a greater or lesser degree.

    Symptoms fluctuate but I always feel extremely ill but not really tired.

    During the last 3 years:

    Have had several severe and unusual reactions to viruses (one with severe hives and head swelling, one with the severest form of pomphlyx the doctor had ever seen , one causing hives in my eyes) which have led to fatigue, weakness, greatly increased muscle stiffness, pain and soreness, a poisoned feeling all over and most recently, a marked sensitivity to fragrances and chemical odours.
  2. yellowbird

    yellowbird New Member

    Phase 3 doesn't sound entirely familiar, but phases 2 and especially 1 sound exactly like M.E. People have all kinds of weird variations on the core symptoms though. Are you confused because you have not been formally diagnosed? You say you have been on the board a while, helping others so I'm not entirely sure what you are asking. You do sound distressed though... please take good care of yourself.
    And definitely look for a Dr. who diagnoses ME/CFS.[This Message was Edited on 01/26/2007]
  3. springrose22

    springrose22 New Member

    ...and other problems possibly. Do you have dental amalgams? Marie
  4. PVLady

    PVLady New Member

    Lets keep your post "bumped". We have many very knowledgable people here who will give you some good information.

    When I say "bumped", it means to post a reply to your own post and just type in "bump" to keep your message on the first page of this forum.

    Sometimes, it moves so fast here, your message will go to the second page and back, and no one sees it.

    Please make sure to keep checking your message for responses, I am sure you will get alot if you give it time.

  5. wrthster

    wrthster New Member

    I think Beach living gave you great advice. If you call Dr. Enlander's office in New York, they should definately know of a CFS specialist in England. Dr. Enlander is from Ireland originaly, and really looks at the infectious side of this disease. His web site is down, so you will have to call. The number is: Dial the country code and then (212)794-2000. Best of luck.
  6. monicaz49

    monicaz49 New Member

    ive got many of your symptoms.
    ive been told i have cfs, lyme and dysautonomia.
    its hard to say...even if you have a diagnosis for all of them.
  7. Slayadragon

    Slayadragon New Member

    To your knowledge, have you been exposed to any particularly toxic materials during your life? (This could have been long before your illness began, but the few years immediately preceding it are especially important to consider.) Some people are exposed to toxins on a continual basis in their own homes, and so this is something to consider as well. Chemicals of any kind whatsoever can cause problems.

    This is a very wide array of symptoms. It seems to me that you've had a number of various problems over the years (viral, yeast and autoimmune problems amongst them), but it doesn't sound to me like one particular disease is causing all this stuff.

    Rather, it sounds like your system is inherently broken and that you therefore are susceptible to all kinds of problems that wouldn't bother healthy people. Off the top of my head, the only thing that I can think of that I would clearly suspect of causing all these problems is toxic exposure.

    I'd try to find a doctor who knows a lot about this area and see what s/he says. My own CFS doctor treats a lot of people with this sort of problem, but Indianapolis (have you even heard of that city?) would be a long way to travel if you are indeed in England or some other country other than the U.S.

    Hopefully if you search hard enough, you can find someone who is an expert in this area. I would think that the areas to search would either be in environmental medicine or people who (like my doctor) specialize in illnesses that the medical establishment has yet to figure out. If you keep asking, you should be able to figure out what kind of doctor you should see for this type of problem.

    If this indeed is your problem, doctors may not be able to fix you completely, but they likely would be able to help you to at least a significant enough extent to make your life more tolerable. That's not any different than what most doctors (even if they're good) do with CFS, of course.

    Again, this is just a guess off the top of my head. Perhaps other people will give you better ideas.

    [This Message was Edited on 01/26/2007]
  8. Hope4Sofia

    Hope4Sofia New Member

    I understand how lonely and desperate you feel. I'm sorry for your struggle. I think many of us are in search mode - trying to find an answer to what's wrong with us.

    I agree with no-fool that your condition sounds auto-immune in nature. Maybe lupus.

    I have a friend who is a lot like you. Her Dr diagnosed her as mixed connective tissue disorder because she has so many different pieces of a multitude of illnesses.

    Maybe you could list what has been ruled out.


  9. Bunchy

    Bunchy New Member

    Thanks - I do not have post-exertional fatigue more pos-exertional pain, stiffness and aching.

    I also thought with the variety of symptoms it could not possibly be just ME as no-one here has the same symptoms or as many.

    I've never met anyone with the standing, sitting problems for example that I mentioned in my second phase.

    One doctor thought ME but others did not.

    I try to help where I know about a specific symptom.

    Any more input would be gratefully received, thanks.

    Love Bunchy x
  10. Bunchy

    Bunchy New Member

    I also suspect infections but no viral infections have been positive so far on normal tests and in the UK it is very difficult to get tested for other pathogens or to get more sensitive tests done. I am also suspicious of Igenex in that they seem to find everyone positive for Lyme.

    I did have extensive testing for parasites and candida and nothing was found.

    Any further advice would be helpful - thanks for responding.

    Love Bunchy x
  11. Bunchy

    Bunchy New Member

    No - amalgams removed years ago - thanks anyway.

    Love Bunchy x
  12. Bunchy

    Bunchy New Member

    Where can you find the online symptom checker? I think it would crash if I put in all my symptoms...LOL

    I don't have the Lupus rash or organ involvement - my illness seems to be more related to the Central Nervous and Immune systems. I am suspecting autoimmune stuff going on plus Fibro plus CFS and the neurological symptoms I had in my third phase are, so far, a mystery.

    Please let me know about the website - just point me in the right direction.

    Thanks Bunchy x
  13. Bunchy

    Bunchy New Member

    Thanks - maybe I will give him a call next week.

    Love Bunchy x
  14. Bunchy

    Bunchy New Member

    Thanks for bumping my post - it's so helpful to have others opinions especially people with similar symptoms.

    Love Bunchy x
  15. Bunchy

    Bunchy New Member

    Do you have some of my weirder symptoms that I describe in my second and third phases? If so which ones and what do you take for them?

    Thanks Bunchy x
  16. Bunchy

    Bunchy New Member

    Thanks for your input.

    I have been tested for heavy metals - all negative, Candida - negative and parasites - negative.

    I am not aware that I have been exposed to any other toxins of particular note when I was younger.

    Have you got any other tests in mind I could try?

    Thanks Bunchy x
  17. Bunchy

    Bunchy New Member

    What is mixed connective tissue disorder?

    I don't think it is Lupus.

    Thanks love Bunchy x
  18. Catseye

    Catseye Member

    Have you considered food intolerance as well? I noticed in your bio you like to eat out alot. I used to LOVE going to nice restaurants. If you're eating out, your'e not eating healthy because the healthy ingredients are just too expensive for restaurants to use. Alot of your symptoms I get from dairy, for example "buzzing", can't get enough air when I breathe, heat intolerance, just overall bad feelings.

    Have you tried giving up wheat and dairy? You should notice some results in a couple of days but it takes awhile to get out of your system. That means a big dent to most people's diets: no milk, cheese, yogurt or ice cream. And wheat is in EVERYTHING, bread, cookies, crackers - practically anything that comes in a box has wheat in it. You could get some substitutues at health food stores, like gluten free breads, cookies and crackers. There are gluten free flours for cooking. And you can use nut milks or rice milk; don't switch to soy, though.

    I'd start with these, dairy made me feel like I was dying for the longest time. I just didn't know. And it only started after I got sick. I had been drinking it all my life and, looking back, the only problem it gave me was hay fever.

    best wishes,


    start eating tons of vegetables, instead, food is no longer a luxury for me, it's part of my "medicine"[This Message was Edited on 01/27/2007]
  19. Hope4Sofia

    Hope4Sofia New Member

    I got this when I googled MCTD. I hope this is helpful.:

    What is Mixed Connective Tissue Disorder?

    Mixed Connective Tissue Disorder is an autoimmune process with symptoms of Scleroderma, Myositis, Systemic Lupus Erythematosus , Rheumatoid Arthritis and/or other autoimmune diseases. It is a description of a group of symptoms occurring together. This is different from a diagnosis that describes the underlying process.

    It is a disorder of the immune system, which normally functions to protect the body against invading infections and cancers, and toxins. In Mixed Connective Tissue Disorder, as in other autoimmune diseases parts of the complex immune system is over-active and produces increased amounts of abnormal antibodies that attack the patient's own organs.

    Some argue MCTD is not a distinct entity at all, and is just one of the forms of Lupus or Scleroderma.

    MCTD can affect many parts of the body, including the joints, skin, kidneys, lungs, heart, endocrine, digestive, and nervous system, blood vessels which all are made up of connective tissue. There are reports of psychiatric disturbances similar to those found in Lupus. The signs and symptoms of MCTD differ from person to person, with the symptoms of either Lupus, or Scleroderma, or Myositis or other autoimmune disease being most prevalent. Since its manifestations can vary it is often misdiagnosed. T

    he disease can range from mild to life threatening. It can be mild for many years, and then after about 20 years of having the disease a medical crisis may occur. The lungs and kidneys are particularly at risk. Lungs and kidneys symptoms are particularly serious involvement and should be monitored vigilantly by both the doctor and the patient.
  20. California31

    California31 New Member

    A friend just sent me a bottle to try...and then I got a letter from a local chiropratctor about a similar product...I've been taking about a week now....and have not had any pain lessening...(I know it's a short time)...I'm hoping that it will kick in and help, as another poster mentioned here that a similar product has helped him...but right now having to reserve the pain level remains fairly high.

    Your symptoms sound daunting....hope you can get some help...some relief...soon.
    [This Message was Edited on 01/27/2007]

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