AUTOIMMUNE SURVEY Please Respond

Discussion in 'Fibromyalgia Main Forum' started by Chootik, May 4, 2006.

  1. Chootik

    Chootik New Member

    Hi Everyone!

    I am a member of this message board and have really benefited from all the wonderfull people who post about all different topics that are so helpfull to all of us who are looking for the answeres!

    I am a CFS suferor and also have Hashimotos Thyroditis, which is an Autoimmune disorder. I have been doing a lot of research on both CFS and Autoimmune diseases and was wondering how many of us here suffer from any or more than 1 Autoimmune disease??

    There seems to be a lot of research that supports the connection between CFS and Autoimmune, specially when it is initiated by an infection. Personally my CFS started when I got a Mycoplasma Infection and then went through a few months of totally feeling sick and finally due to lack of sleep and stress at that time in my life, I got full blown CFS! Since then it's been a total fight to get back to being healthy and as I'm sure you all know it's a strugle at best.

    Anyways, I am hoping we can start talking about Autoimmune issues as they pertain to CFS, so maybe we can find new ways of curing, testing and helping eachother. Also if anyone had good info about supplements that are OK to take for Autoimmune (specially immune supplements) please post a message.

    Much love to everyone :)

    Chootik
  2. mrstyedawg

    mrstyedawg Member

    I have CFS also. But I do not have any autoimmune disease (unless CFS is one) my neuro said that CFS is actually an autonomic nervous system dysfunction. I know that I was diagnosed with this (ANS) at John Hopkins and the Institute for Neurology and NeuroResearch in Chicago. So I am thinking that CFS is an autonomic nervous system dysfuntion disease. But noone knows for sure.
  3. LISALOO

    LISALOO New Member

    I have CFS and Fibro. I also have Interstitial Cystitis, which is an Autoimmune disease. Allergies are sometimes included as this too, since we overreact to substances.
  4. libra55

    libra55 New Member

    I have FM. Also Crohn's Disease and Asthma which are both autoimmune.

    Michelle
  5. SPR30

    SPR30 New Member

    I have been diagnosed with Chronic fatigue,Fibromyalgia,Myofascial Pain, Rheumatoid arthritis,Osteoarthritis,Nephrolisiathis,Neuropathy,Adema,High BP,chronic PLM and suspected Stiffman's.
    Yes, I think I have a few autoimmune diseases in the list,lol!
  6. cookstove

    cookstove New Member

    After 50 years of suffering from chronic strep throat, bronchitus and viral as well as other types of pneumonia I was diagnosed with common variable immune deficiency.

    I was on regimes of predasone, gamma globlin shots and various other things before the diagnosis. None of them helped and some (the predasone in particular) did harm.

    After treating the common variable immune deficiency for 10 years, I am finally off of allergy shots for the first time in 40 years and have stayed bronchitus and pneumonia free for the last three years.

    Unfortunately all of the years of ill health took a tole on my general health. I have pulmonary hypertension and the doctors think that a large part of this was caused by the long lasting common variable immune deficiency.

    This disease has not helped the body fight off the other illnesses, as our body is worn out fighting the tiredness and pain of this.

    My doctor feels that with this condition, our bodies are set up to acquire one of the many auto immune diseases. Which ever gene is most receptive. So some of us have CFS, some FM, some MS, some Parkinson's Disease, some Paget's Disease, etc. etc. The list goes on, including cancer. So many illnesses are associated with a weakened immune system.

    My doctor says that we are all part of Jerry's kids. All tied together with the weak genetic make up susceptible to the list of multiple immune diseases.
  7. Marta608

    Marta608 Member

    Interesting. I had thyroiditis years ago and often wondered if this DD got a foothold then. Maybe so, however, I had constant tonsilitis as a teen too. Dad believed that, if we were born with an organ, we should keep it, regardless. I had a tonsilectomy when I was on my own at 22. Yuck.

    Marta
  8. leodalion

    leodalion New Member

    I have rheumatoid and I had it as a kid, then as an adult I was really tired all the time and always attributed it to the ra. I have wicked bad fibro, cmp, connective tissue b.s. which is so painful my cat can't even walk on me. It hurts that bad and thats on meds.
    I think there is a connection. Its all adding up... even the allostatic load thing. If you have a invisible disease and your in pain and people cant see it but you know it, thats stress in and of itself. A dominoe effect.
    Plus, not bragging here because its nothing to gloat about, but I have a really high tolerance to pain because of the mind bending pain I had as a kid. I didn't take any meds. for pain 'til I could not sit, stand, or lay down. It was my last fibro flare and actually only my 2nd one.
    Oh yeah I had more than 2 "flares" I just forgot about the milder ones. I had to come back and edit, its really foggy in here.
    Oh yeah hey, to all the people who have ra and fibro. I read somewhere that its not a good combo. They say its worse for us because our immune system is on the blink to begin with... so it only makes sense that we get a bit more pain, I think. Minimizing on the bit part. Also, anyone who has any compromised immune system, of course they are going to be in worse shape. Its all coming back to me now. [This Message was Edited on 05/15/2006]
  9. KMD90603

    KMD90603 New Member

    I don't think there is any proven connection as of yet. I have CFIDS and no other diagnosed autoimmune diseases. At this point, I think everything is just speculation. If you see a neurologist, they'll say it's a disease of the nervous system. If you see an infectious disease doctor, they'll say it's an immune system problem. If you see a cardiologist, they'll say it's cardiovascular-related. I guess you get my point by now. Basically, what I'm trying to say, is that anything's a possibility at this point. But I sure do hope they find a way to diagnose and treat it sometime soon.

    Kim
  10. lebra

    lebra New Member

    yes, I have been diagnosed with Rheumatoid Arthritis and Fibromyalgia. I think the fibro bothers me the most consistently. The fatique is debilitating and just need a nap or two every day. Not working anymore after going part time last year. Then found breast lump and has surgery and chemo for cancer. I have knotty areas under the skin that are very painful and swell at times. They are so painful that I cannot lie on my side. Is this commom with fibro? Rheumatologist has injected a couple of times with cortisone but cant tell that it has helped. I have other areas that are painful and hurt too but I can work around them. Have significant back pain due to disc degeneration(who doesnt after 50)? Sometimes no pain relief at all and just cry. I have also always had a high pain tolerance but these diseases are a bugger. Also have diabetes and controlled high blood pressure.
  11. mollystwin

    mollystwin New Member

    I have 5 sisters and 4 brothers. I have fm, cfids, and lichen sclerosis. I have a sister with Lupus, 4 siblings with diabetis, 2 siblings with psoriasis, one sister with rosacea, one brother and two sisters with fibro and CFIDS, a sister with lichen sclerosis. Auto immune illness tend to run in families, and not necessarily the same autoimmune illness, but ANY autoimmune illnes. Many people have more than one autoimmune illness like most of my siblings and I do. Most of my siblings also have severe allergies which I have been told is autoimmune by my son's allergist.
    In my husbands family, his mother has scleroderma, asthma and another illness that for the life of me i cant' remember the name right now! (brain fog) His neice has that same thing. His sister has Fibro and CFIDS and I beleive other autoimmune yet to be diagnosed.
    So my children have it genetically on both sides of the family. My older son had severe asthma as a child, with only mild problems as an adult, and also has low testosterone levels. I just pray everyday for thier health.
    dar
  12. Fibrolady37

    Fibrolady37 New Member

    have cfs,me,fms,asthma,allergic rhinitus,myofacial pain syndrome,restless leg syndrome,ibs,sleep problems &. bladder problems i have 40 + illnesses & a few are autoimmune illnesses.
    I have sygrens syndrome which is an auto immune illness.
    I saw my doctor yesterday because ive been havin serious pain for a few weeks now in my right wrist.
    I had 2 go because i couldnt stand the pain anymore my rheumatism is the most crippling its ever been.
    My doctor asked me to take the splint on my right hand off & put my wrists on the table.
    He said my left 1 is very swollen & my right is more swollen.
    I have to go for an xray next tuesday morning will u all please pray 4 me as im so scared of what it might be.
    I have enough pain with my fms i couldve done without this.
    T here must be a few autoimmune illnesses there.
    Hope this helps.
    Fibrolady37.
  13. SandraJean

    SandraJean New Member

    Hi,

    Yes, I have Psoriasis, Psoriatic Arthritis, Fibro, RLSand quite a number of other conditions too, but these are of few I know that are autoimmune too.

    Sandy
  14. skierchik

    skierchik New Member

    I have type 1 diabetes, hashimotos, & CFIDS/FM.

    Don't need anymore, thank you very much.

    skierchik
  15. Chootik

    Chootik New Member

    Thanks you guys for responding. 14 people responded so far and out of that 11 have some sort of Autoimmune disease. Also it seems most people end up having more than 1 disease as time goes on.

    Unfort. I didn't get too much on what people are doing for their Autoimmune.

    Maybe we can talk about what supplements work for Autoimmune? I know that Anti-Inflamatory supplements such as Omega 3's and Essential Faty Acids and some enzymes are really good. So if anyone has any knowledge about this.. please share..

    Thanks
    Chootik
  16. meowee

    meowee New Member

    I have FM,CFS,Pernicious Anemia, and IgA deficiency. My mother has lupus, my grandmother had the anemia, my daugher has the IgA deficiency and anemia. I think it is all under the same umbrella.

    Best Wishes to all
  17. Zuben

    Zuben New Member

    Hi,

    My t-cell (white blood cell) count is consistently maxed out. High normal is 10. I have up to 17. With CFS this count can go either way. When I see a new Dr. and they look at test results, they call to tell me I must have a massive infection. This means I have to be checked for Lupus from time to time. The body is actually attacking itself and is exhausting all on its own! Yet, this does not mean I don't get infected. In fact, I usually have some low grade infection which is difficult to isolate. This is a really serious disease!

    Zuben
  18. libra55

    libra55 New Member

    I take an immune suppressor (6-MP) for the Crohn's. It works well. I have metastatic Crohn's which means it is in my other organs in addition to GI tract - skin, eyes, and joints to be specific. I was on Prednisone but am weaned off now.

    I also take Folic Acid (Vitamin B-9) by prescription, helps with absorption and red blood cell formation.

    For the FM the only thing I take is Klonopin for sleep at night and to help with anxiety. It does help my pain a little.

    For my asthma I use an inhaled steroid (Advair). I never need a rescue inhaler.

    I also take a good multivitamin, I was on iron therapy but don't need it now. I don't mess around with anything OTC for the "immune system" because mine is suppressed for a reason and I don't want to fool with it. I did get a flu shot for the first time this past winter. I had no bad reaction whatsoever to it. I did not get the flu and I only had one cold which was very mild.

    I forgot to mention I also have psoriasis, which flares up only occasionally.

    I have four main medical specialists (family practitioner, gastroenterologist, opthalmologist, and rheumatologist) and I see them fairly regularly. They all get along fairly well and will talk to each other; occasionally there is a battle of wills about the treatment plan but it usually gets resolved.

    I guess what I'm trying to say is I basically do mainstream medicine and not a lot of alternative therapies.

    Michelle
  19. LittleBluestem

    LittleBluestem New Member

    I have CFS and mild respiratory allergies (hypersensitivities). The only thing that I take specifically for the allergies is MSM. I do also take Omega-3 fatty acids.
  20. Cromwell

    Cromwell New Member

    In fact, I was just thinking about whether the horrible neck pain is related to the Hashimotos this morning as weirdly a lot of my other pains disappeared last night yet I awoke with an horendous left neck pain along with the usual numb left face. This pain feels nothing like the usual FM pains, but instead, feels more like a huge crick in the neck that will not go away.

    MARTA-re your dad, I was actually born without tonsils as are all the females in our family. They look like tonsils that were badly removed, little pits there, but no tonsils.

    My ANA is always high.

    Love Anne C
    [This Message was Edited on 05/06/2006]