Anyone feel like playing doctor?

Discussion in 'Fibromyalgia Main Forum' started by BonBons, Nov 21, 2002.

  1. BonBons

    BonBons New Member

    Here is my question: I do have other ailments that can be attributed to many of my symptoms, but everything I read about CFS and fibro states that there are no other precipitating problems for that diagnosis. Am I understanding that because I have IBS, allergies, migraine, depression, HBP, cerival and lumbar disk problems, sciatica, rosacea, etc. that those issues would preclude my getting a CFS or fibro diagnosis? I do think it's more CFS, but it gets awfully muddy at times. Thanks to all, I'll say it again; this is a well-informed and supportive group. I appreciate it.
    BobBons
  2. BonBons

    BonBons New Member

    Here is my question: I do have other ailments that can be attributed to many of my symptoms, but everything I read about CFS and fibro states that there are no other precipitating problems for that diagnosis. Am I understanding that because I have IBS, allergies, migraine, depression, HBP, cerival and lumbar disk problems, sciatica, rosacea, etc. that those issues would preclude my getting a CFS or fibro diagnosis? I do think it's more CFS, but it gets awfully muddy at times. Thanks to all, I'll say it again; this is a well-informed and supportive group. I appreciate it.
    BobBons
  3. dd

    dd New Member

    I have a lot of the same problems as you except for the rosacea and the HBP. I was diagnosed with each one of those separately and then the CFS and FM, but, my endo said that all of the other diagnosis does go along hand in hand with CFS and FM. I too have mostly the CFS but am in a major FM flare right now. Sometimes it is difficult to differnciate between the two though.

    Take Care,

    Debbie
  4. JaciBart

    JaciBart Member

    I have fibro and IBS, migraines, depression, high blood pressure off & on, vision problems, jerking, racing mind, insomnia, hypo thyroid, etc. It is all part of the thyroid.
    I only mentioned a few of my problems, I have many more.

    Jaci
  5. BrownSuga

    BrownSuga New Member

    I was dxd with cfs and 5 yrs later with fms, But I never really payed much attention in the order of the different side affects until this question.
    after being dxd with cfids, I had problems with my hands turning red white and blue in the least of cold weather...turned out to be raynauds phenomenon (sp)
    not long after that I was dxd with IBS and all the other problems I have came after being dxd with fibro.

    Good Question BonBons!!
    Hugs Suga
  6. klutzo

    klutzo New Member

    Except for the high blood pressure and the disk problems, all of the other things you mention are officially listed as "concommittant symptoms" with FMS. They often appear before the main symptoms, which is why I tend to believe we are born with this illness and it just needs the right environment to come out and clobber us!
    Klutzo
  7. Shirl

    Shirl New Member

    The first thing I started with was a bout of pheumonia. Then I acquired a case of pleurisy, then bronchitis, THEN, came the Pain! It was diagnosed as Fibrositis, alright, tne the name was changed to Fibromyalgia.

    All the other symptoms came after, IBS, severe sinus, arthritis, (also had ulcers), absessed throat, ears, and the beat goes on.

    Before the pneumonia, I had never been sick a day in my life. Not even childhood illnesses, no measles, mumps, chicken pox etc. NOt even a head cold! I did not know what 'sick' meant!

    I had three children without a problem, in fact I had two of them natural, no drugs at all. No hard labor, nothing!
    My son was born in the hall in the hospital! Couldn't make the delivery room. All I had for labor pains was a horrific backache.

    You know, everyone has different stories how they contacted FM/CFS. It does not make sense. But it is true. We are all so darn different.

    Shalom, Shirl

  8. kadywill

    kadywill New Member

    do you think we have a collection of symptoms that if treated individually will result in a remission/cure of what was diagnosed as FMS?? I have had one symptom after another, on and on, since the 1970's. This started out as an allergic response to something???? and manifested as chronic angioedema and hives; then I had migraines and then I caught everything and was out of work a lot with various complaints. Then came the depression, but I was in an unhappy marriage and I had a lot of issues from my past to deal with. Then came fatigue. Then came the pain. I would have periods of time during which I felt somewhat normal and then I would relapse into a state of fatigue and depression/anxiety/hopelessness. Now, pain is my chief complaint. An MRI diagnosed spinal stenosis, bulging discs and joint arthropathy and the pain was horrendous. As of last week, I am no longer working as a nurse; am now a housewife for the first time at 47 and am taking Oxycontin routinely and am averaging 2-3 Oxy IR each day for excruciating sacral/buttock/thigh/groin pain. Surgery is my only option, other than rest, narcs, water therapy and massage. To me, surgery IS no option as I do not recover well and am at risk due to unstable hypertension, angioedema, 2-3+ pitting edema, liver damage, renal failure, fatigue and chronic pain. When I first saw a Rheumatologist for chronic pain, I told him that I had symptoms of FMS; he said, "Well, I suppose you've studied online and have done your research on this." I told him I had. He assessed my status r/t pain/tender/trigger points and prescribed pain med. He first asked me which was bothering me the most, pain or fatigue and I told him that I could deal with the fatigue, but the pain was unbearable. He gave me Vicodin prn, Soma prn and Mobic 15mg. QAM. in addition to the Ultram I was already taking. He has seen me several times since then with no changes in my meds. He never really came right out with a diagnosis, but he agreed with me, in not so many words. He was treating my symptom...pain. I had the MRI prescribed, at my request, by my PCP. I think he thought it was FMS pain I was experiencing, but it wasn't. This pain in my buttock, thigh, etc. was my main pain all along! Do I really have this syndrome????? Is the fatigue related to something else? Is the lifelong insomnia and IBS and headaches and soft tissue pain and dx. of non-specified collagen vascular-connective tissue, autoimmune disease something other than FMS? What about the chronic angioedema and hives? Is this related? Was I just happy to have a name to put on my many symptoms? I don't know, but at least my symptoms are being treated. When a person has this many symptoms of unknown etiology, he/she is just happy to be able to name the demon possessing him/her! I hate all of this! I, like many others, was so healthy until these crazy things started happening out of the blue. I don't care what they want to call it, I just want it recognized and treated effectively.
    Sincerely,
    Kady
  9. 1Writer

    1Writer New Member

    I really don't care what they call what we have as long as someone out there recognizes that we have something wrong! With the exception of the HBP and a few other symptoms, I have all of BonBons. I have been dxd w/CFS and am being treated...with small successes...good and bad days...and with the help and support of the kind and INFORMED people on this board, am managing to get by and learning something new everyday. BonBon, read all you can...learn all you can...talk to everyone you can...keep an open mind and be will to try new things...and find a doctor who will help you fight...one who understands CFS/FM and understands your special needs. And if you need support, you'll find it here...a lot of it!
    #1Writer
  10. karen2002

    karen2002 New Member

    Bon Bon---I have ---IBS, allergies, migraine, depression, HBP, cervical and lumbar stenosis, sciatica, but do not have rosacea, I have still been DX'd with Fibro and CFS. So my answer would be no---that wouldnt preclude a diagnosis. Some of those listed are part of common complaints of these disorders. Others I believe are part of our systems being in disarray, and not funtioning correctly, due to Fibro/CFS. Lastly, I believe the remaining can be triggers.
    Karen
    karen
  11. lucky

    lucky New Member

    I wonder if it not true that with CFS or FMS or both the many symptoms occur because of the malfunctioning of the immune/neurological and endocrine systems not functioning properly. The reason for this I have been told by a few doctors is or was a virus infection(s) which damaged these systems.
    I have read on this board that there are quite a few members that after an EBV infection got CFS, I am one of them. Although I strongly believe that there are some genes playing a role in all this as well. Unfortunately, and until there is a definate answer to all these questions, you are right, the best one can do is treat the individual symptoms.
    Lucky
  12. CJR

    CJR New Member

    I was told by one doctor I had IBD and my rheumatologist started me on Remicade for the arthritis in the sacral-illiac joint and other places. Then another doctor told me I had IBS and not IBD and told my rheumatologist to stop the Remicade. My rheumy and I discussed it and decided not to stop it. This is suppose to be for autoimmune diseases and I feel a lot better on the Remicade. I have less arthritic pain. (I do not have rheumatoid arthritis because after 25 years I have very little joint damage.) I have more energy and a rash that was diagnosed as rosaea and with 10 years of almost continueous breakouts completely dissappeared after the first Remicade treatment and came back two weeks before my next one. Now 5 days after the next treatment it is gone again. I wrote in another post about how tired I am of no diagnosis. I only listed a small number of my symptoms. Could this be an autoimmune disease that is undiagnosed because it causes so many symptoms. Remicade should not help if it is a collection of many diseases, should it. (For those of you who do not know what remicade is you can go to www.remicade.com)
  13. CJR

    CJR New Member

    I typed this once and it did not show so I will try it once more. I think your theory about low oxygen levels is very interesting. I have had neck problems. (Arnold-Chiari Malformation causing brain stem compression) I have tachnicardia which requires daily medication (Corgard) to keep my heart rate under 100. I am pretty sure (by my husbands observations and other sypmtoms) I have sleep apnea. All of these cause low oxygen levels. Also, whenever I am put on an oxygen monitor it always reads about 94 or 95%. None of my doctors have ever commented on it but isn't a monitor suppose to read 98% or better? I am having a sleep study in January. My rheumatologist said he has seen many problems improve just by correct diagnosis and treatment of sleep apnea. Marla, what kind of a doctor are you. It has been my experience that D.O.s or chiropractors and even dentist do not have a problem with a diagnosis of FMS or CFS but many (and maybe most) M.D.s do. Do you think that this is because they if they can't fix something that it can't be their fault, so therefore, it must be the patient's fault. I am an registered nurse but thanks to a series of doctors that incorrectly diagnosed me with Multiple Scrosis at the age of 28 and did not diagnosis or correctly treat my Arnold-Chirai Malformation until 10 years later, I am left with neurological problems that make working difficult along with all of my other problems. And now, although I love medicine, I am just too far behind, even if I were completly well. Carol
    [This Message was Edited on 11/29/2002]
  14. kadywill

    kadywill New Member

    I appear to be in no respiratory distress, have no rales, rhonchi, (usually) no wheezing, but my SATS/SPO2 per pulse oximetry is always less than 91. I have decreased breath sounds bilaterally year round, and have used Albuterol Nebs PRN with good effect and I have MDI in my purse, but rarely use them. CXR results show no infiltrate. I have no KNOWN allergies, but I have had NUMEROUS patch/scratch tests done over the years due to the Angioedema and Hives and I always react to everything when I'm having my hives. I have dermatographic skin and scratches will puff up and stay that way for days. We STILL don't know why this happens. I am in no greater stress prior to these episodes than I am at other times. STRANGE, huh? Part of THIS overall "syndrome?" I could fill up an entire page with my symptoms......
  15. lucky

    lucky New Member

    Thank you for your advice and your messages. I have been following the many aspects of alternative and med programs for the 15 yrs. I have been ill, but the quality of my life is not due to the alternatives but the meds I am taking. Luckily, I have found some which do agree with me and which are a vital help in dealing with some nasty symptoms most of us have to cope with. Thanks to a good doctor, educating myself and learning, listening to others, being flexible as much as I can, I have learned that due to all of this, CFS/FMS is much easier to live with, but it takes time, perseverance and above all patience (which I have very little of at times) to get to this level.
    I did appreciate your postings very much and also see that I seem to be doing the right thing. After 15 yrs. we all learn from our own experiences and also learn to be our own doctors as well, and if we can get to this level, we also are able to challenge doctors and others in the medical professtion. Luckily, it worked for me, and I had very little problems to be treated accordingly because no doctor put a pill into my mouth which I did not approve of.
    Take care and will watch for more of your postings. Kind regards, Lucky
  16. CJR

    CJR New Member

    I would like to discuss it more with you also but I wonder if it would do better to talk by e-mail instead of on here. If so my e-mail is gfrcjr@juno.com I understand you might not want to give out your address but if you would rather do it here just let me know. I, of course, would never give your address to anyone else. My history is very long though and not all of it has anything to do with FMS. As I said, right now I am also researching. Carol
  17. Mikie

    Mikie Moderator

    At this point, I do not believe that anyone knows what causes FMS/CFS or whether they really exist as an illness/disease in their own right or whether they are just a collection of symptoms. It's possible that, like cancer, CFS/FMS can manifest itself in many ways.

    We have always advised newcomers here to treat their worst symptoms first and then move on to the second-worst symptom, etc. I have never heard of anyone being "cured" of his or her CFS/FMS by doing this, but many have improved to 80-90 percent of their pre-illness health. Most have done this by trial and error, by doing a lot of research on their own, and by finding docs who are either knowledgeable or willing to learn and try new treatments.

    Some evidence points to our illnesses as more than just a collection of syndromes and other evidence condtradicts this. I believe only time and research will truly answer this question. In the meantime, we have very little choice but to treat our symptoms to receive relief. I do not, however, think we should lose tract of the whole person in the process. The mind/body/spirit is a very strong connection.

    I have noticed that when I receive benefits for one symptom, the effect often affects other symptoms. The most obvious is getting quality sleep. We have more energy when our sleep improves, but we also start to get relief from our pain as our bodies are able to produce growth hormone during sleep and are able to repair muscle damage. By the same token, when we get relief from pain, we are often better able to sleep. Most of our treatments work synergistically with one another if we use the correct combination of treatments.

    Love, Mikie