FIVE types of FM

Discussion in 'Fibromyalgia Main Forum' started by auntcon, Oct 5, 2005.

  1. auntcon

    auntcon New Member

    I've done a lot of research (Just like most people here) I've never heard of this

    I went to a new DR and he said that there were 5 different types of Fibro. That the problem is that DRs treat them like they are the same.

    He thinks my biggest problem is not getting enough oxygen when I sleep. I'll be doing a sleep study in Nov.

    HE also said that the BURNING on the bottom of my feet is caused by NERVE Inflammation. SHowing me how the pinched nerve in by back travels right to the bottom of my foot.

    He put me on a Medrol Dose Pack (Sp?) AND it did help.
    Still sore but not as much. I was having SPASMS in my back.

  2. kat-E

    kat-E New Member

    Relief of Fibromyalgia Through Microcurrent Therapy
    by John W. Addington

    The five types of fibromyalgia are: 1) toxic origin (exposure to organic chemicals or pesticides); 2) emotional trauma or stress induced; 3) genetically predisposed; 4) immunologic origin (resulting from viral or bacteria infection or in response to immunizations); and 5) cases resulting from spinal cord injuries. McMakin has had much success with all of these types except the fibromyalgia that is immunologic in nature. That having been said she has found in her practice that the immunologic type of fibromyalgia is extremely rare.

    I am glad to hear the Medrol is helping you some auntcon.
    I had never heard that there are types of FM, I found that interesting. Now I suppose it is a matter of figuring out what type, it could be any of the above. I wonder if it is possible to have multiple reasons.


  3. orachel

    orachel New Member

    ON FIRE!!!! I've had extreme sensitivity all over my body, especially on bottoms of feet, but never felt this weird burning sensation on foot before. It literally woke me up from a dead sleep, which explains why I'm up and posting at 1am! lol

    I will definitely speak to my dr about this burning foot as a nerve inflammation thing. My nerves certainly do seem to be inflamed....both literally and figuratively, lately! lol

    Thanks for the info...really weird timing!
  4. ldbgcoleman

    ldbgcoleman New Member

    I think I have the viral bacterial that may have been stress induced. This stuff is so hard to diagnose and treat! Lynn
  5. rileyearl

    rileyearl New Member

    I think I fit into all of the first 4 categories. Thank goodness they aren't mutually exclusive! Thanks for the info!

  6. Jeanie101156

    Jeanie101156 New Member

    Thank you auntcon. This is interesting. I have never heard of it, but it makes a lot of sense. I believe mine is the immune fibro. For this reason. When I got hit with fibro in 1990 I had had the flu I thought. But it never totally went away. I have a lot of the signs of lupus but the tests just are not saying I have it, plus I have localize slceroderma.
    Thanks again for giving us the write up.
    Gentle hugs Jeanie
  7. elsa

    elsa New Member

    I think it makes more sense to read the five (possible)CAUSES of fibro. You know, ... one illness with five causes ie immune, trauma, spinal cord ... etc.

    It is tough enough to start splitting hairs like this. LOL The causes all end up at the same place in the end ... soft tissue pain, neuro pain, insomnia, EDS,.... you know the list.

    Wonder why one would want to cloud things even more? The wording is an attention grabber and would entice someone to pick it up ... Let's wait until everyone accepts the one fibro before we start listing four more types.

    Who knows?!

  8. spmary

    spmary New Member

    Hi...I was surprised too. I think I have all types. One couldn't hurt this bad.LOL you sre right about the feet.
    my neuro called it neuropthay Can't spell it tonight. I take neurotin for that. It helps. I'm just coming off a flare. This one lasted two weeks. I never had one this bad before. Is this how it happens? And do they come on a regular basis? Somthing causes it? Or is it just out of the blue? What can we do to avoid them or lessen it when we get them? Anyone have an opinon? Thanks for any info, Mary
  9. auntcon

    auntcon New Member

    thanks for the .com info. I live in the OHIO valley so there's a good chance that I have been exposed to some toxic waste ;-( As for emotional trauma or stress... this is what kicked mine in... The DH and I were sitting in our Family Dr's office and a car hit the wall behind us moving the wall behind us about a foot--me and my chair flew and my husband flew into the middle of the room.
    the pain started that day in 2001 and hasn't stopped since. 3) my sister also has fibro... from a bad fall through a porch. so I don't know if genetics applies or not but probably. 4) NEVER sick but did have chronic Fatigue and allergies 5) recieved a bulging disc that day in 2001

    I hope we all get this figured out. As much imput as we can all give and compairing notes will help in the long run (I hope anyway)

    I totally understand being woken up from pain.
    and the literal and figurative inflamed nerves (12 yo son and 15 yo dau) LOL Hope you feel better.
    lots of people have said that they've gotten this from a bad case of the "flu". And really who doens't have stress?

    guess any new idea might help someone ;-D

    Thanks for the gentle hugs, I cringe when people hug my back with a PAT (feels like a pound!)
    It's scary to me to see how many people have been told they have lupus and then that it's "just" FIBRO I have a friend that has lupus and it is acting against her NOSE she has to have chemo

    How do you know for sure?

    POSSIBLE is right... but I was great before the accident.
    He really wasn't splitting hairs he was stating that there were 5 types and that not everyone knows it... like he KNEW (if it matters he's a do not md)

    he broke them down into groups (not like the ones listed above... I don't remember them all but mine was -- he suspects --waiting until sleep study is done-- from not sleeping and not sleeping because I have a problem being able to breath. My muscles in my upper back are still better from the medrol dose pack... I've had a series of shots in my SPINE and that didn't help them as much.)

    I'll get the list better next visit... trust me he gave me so much info I wish I'd had a tape recorder... my memory is shot...took the dh and he doesn't remember either,HA he can usually tell me what I said last week at 2 o'clock on Thurs... Grrr

    And I'm afraid that there will be a group of drs that DO NOT believe for at least another 20 yrs... My lawyer wouldn't even go for the fibro damage because she said the other insurance co would bring in just as many drs as I could to say it was all in my head. grrr

    But at this point I'm willing to try ANYthing to help.
    lots of people are helped with diet and I've heard herbs... one friend that was helped but couldn't afford $50 a week for HERBS...

    I try to avoid STRESS... and white food (flour and sugar --except that chocolate thing)
    Sometimes you just get flares that are in cycles
    I've also had flares that have lasted over a week. and when the weather changes temps changes of more than 30 degrees...(which can happen more than once a season here in WV)
    If I get to HOT or to COLD or STRESSED or TOOOOOOO MUCH ___ fill in the blank
    it's the clue for me that I have to pace myself. And be AWARE of what your system is telling you,
    I hope this helps and I hope you get a handle on this (as much as you can.

    THANKS for all of the responses

  10. lisadot

    lisadot New Member

    Hi auntcon,
    At this point, I kinda think I'm with Elsa. I know, I know, it's really hard to know what to believe. I think there are some people who must have autoimmune problems PLUS fibro.

    The rheumy I was seeing was not my cup of tea. He seems to want to treat EVERYONE with steroids and immune-modulating drugs (interferons and drugs like remicade for arthritis), thinking this was just about auto-immunity. There is so much controversy even within those docs who believe this condition exists!

    I think so much has to do with how your lab results end up, either proving or disproving things like rheumatoid arthritis, lupus, etc. I had a marginal positive ANA (apparently not unusual with fibro and could mean nothing at all). Not that I completely understand that test, and I'm a nurse!My sed rate was 36 when I first saw him (high) but later dropped to 12 (normal). Of course, this guy likes to run his "own" labs, so I'm not sure what to make of it. I do know high sed rate infers active disease process/inflammation. ANA has something to do with the presence of immune system antibodies that attack the body when they shouldn't.

    I KNOW my fibro was brought on due to a horrific ex-husband. It left me with post-traumatic stress and so much anxiety. Sure, I may have been predisposed to fibro (my mother doesn't have it, but she sure has problems with frequent migraines, neck pain, and possibly IBS), but my ex's behaviors threw me over the cliff - physically. I'm sure of it. I had horrid sleep problems (waking up nightly for no good reason)long before I'd been diagnosed with fibro. Even on Trazadone, and I usually sleep through - I still awaken tired as all get out.

    The rheumy I saw gave me a shot of Depo-Medrol and I had awful steroid rage. I was stunned at how I felt. It was like I could not control my feelings at all. My depression soared and I was having suicidal ideations at the time, and I scared myself! Thankfully it passed and I didn't need a locked ward! He gave me this injection the day before I went on vacation with my family! I can't say the drug helped a lot, maybe a little, with inflammation and energy, but not much.

    If you go to Medline's website (part of the National Institute of Health in the US) it says cause is unknown. I've cut and pasted that section here below...


    Causes, incidence, and risk factors

    The cause of this disorder is unknown. Physical or emotional trauma may play a role in development of the syndrome. Some evidence suggests that fibromyalgia patients have abnormal pain transmission responses.

    It has been suggested that sleep disturbances, which are common in fibromyalgia patients, may actually cause the condition. Another theory suggests that the disorder may be associated with changes in skeletal muscle metabolism, possibly caused by decreased blood flow, which could cause chronic fatigue and weakness.

    Others have suggested that an infectious microbe, such as a virus, triggers the illness. At this point, no such virus or microbe has been identified.

    Pilot studies have shown a possible inherited tendency toward the disease, though evidence is very preliminary.

    The disorder has an increased frequency among women 20 to 50 years old. The prevalence of the disease has been estimated between 0.7% and 13% for women, and between 0.2% and 3.9% for men.

  11. auntcon

    auntcon New Member

    exactly what you are saying...
    no known cause and no known cure...

    THAT'S why I hate to go to a new dr.
    but maybe this guy will help
    if not I'm going to Cleveland as soon as I get some $$ ahead to one of those FFCs

    I'm so sick of being sick -- My housework is done by the dh and the teens (2) are SICK of their mother saying I don't know what you are talking about... BUT I TOLD YOU YESTERDAY____ -- I HATE that.

    SO -I don't want to be fooled
    (just because the dr tells you you are paranoid doesn't mean everyone's not out to get you LOL)
    or in our case drs out to get our $$ and our hopes up

    I shouldn't complain I have a great family dr. and dh and teens who love me... but oh IF ONLY

  12. auntcon

    auntcon New Member

    I'm sorry about your ex.
    I have one -- cheating control freak.

    been married now 21 yrs.
    our son almost 13 has had 9 ear surgeries one 6 hrs one 4 hrs --losing a nerve to his tongue and has lost hearing in one ear but it will be able to be repaired at some point.

    It was that 6 hr surgery that made me lose my mind... it was supposted to be 20 min for tubes... If I didn't get sick then ---7 yrs ago...
    stress shouldn't be included in the cause of my present condition.
    thanks for the sed rate info. I've had so much blood work done. YUK
    Thanks for the reply
  13. hdbubblehead

    hdbubblehead New Member

    and to mention perephreal neurophathy. My Aunt suffers to the point of tears most of the day. She also can not have anything touching her feet, even bed sheet.
    shoes? forget about it.
    I have had a one time, for one month experience of what she has suffered, and i don't know if i had a choice if i would rather have the spinal cord narrowing, threatening paralasis, or the horrible swelling and burning pain.
    It's as if you can't feel the bottom of you feet when they are swollen. as if you are walking or standing 3 inches off the ground and the pressure is unbearable.
    There must be an answer to control these symptomes.
    I am in a chronic pain management care, so i am prescribed narcotics for relief, but denied disablility twice.
    makes me mad cause sometimes i can't even put socks on it hurts my feet so bad.
    my only advice is if the medrol helps, okay. your Doc sounds like he cares and is getting to the point of finding you some relief and answers. HANG IN THERE BABY!
    MAKE a journal to help you see what it if that may bring on the severe symptoms and times, and what you were doing prior, even the day before. sometimes it's overdoing, sometimes it's the medications.
    take care of yourself :) thinkin of you..
    your statement was a good one, made me research more on the subject. bless you, always, hd.

    ps.IN TERMS OF DISEASE-Fibromyalgia patients feel pain that is focused in their joints, but in fact, fibro pain is not in the joints at all, but in the muscles and ligaments surrounding the joints. fibromyalgia is really a form of muscular or "soft tissue" rheumatism.
    the word "rheumatism" refers to the pain of inflammation and stiffness of the joints, muscles or fibrous tissue.
    Since fibromyalgia syndrome is a soft tissue rheumatism, it mainly affects the muscles and their attachments to bones, especially the areas of muscle/tendon junctions.
    It is a "syndrome" because it is a "set of signs" and "symptoms" that occur together.(like when ya explain to the "meany" disability judge that you have "overlapping medical conditions, maybe include,ability to work a scheduled job with certain hours, and maybe you are too "lagging" or in severe pain, or too weak to get up now,or in the next 18 hours one as ill as we are nobody who truely knows what "ailments" might sneak into the immune system and disable us? ty ty xx hd
    It sure has been a long time to convience or help doctors to understand, we didn't just make the disease up. if that were true, we would all be crazy. who wants this dibilitating "never know what the day will be like" punk of a bunch (or- darn disease of problems called "hidden diseases" i'd call 'em "punk of a bunch of hidden crises and who won't help? ( i wish Eric Clapton would record these words to a song. The man can SING.
    And that goes for Cancers, gun shot wounds, car crashes & motorcycle wreaks right now I am thinking of KODY, my nephew who I have know all his life, is in extreem medical crises and tramua. he's nearly broken every bone in his body. Our family is feeling so sick from knowing his "state of awareness" or suffering in silencein his unconsious state.
    we all love him we want him here.
    strong healthy funny handsom, slight temper, but a young man with heart. Stay with us KODY MAK. I miss seeing you so much! :) GET WELL SOON Auntie georgette
  14. Mikie

    Mikie Moderator

    I don't think anyone knows enough about our illnesses to know that there are five distinct types of FMS. One may show signs of FMS following trauma or an infection, but not everyone who has trauma or an infection gets FMS. It could be that everyone with FMS is genetically predisposed and the trigger can be most anything or even a combination of things.

    Obviously, if one's FMS is triggered by an infection, one must address the infection. If one's FMS is triggered by trauma, one must ensure that everything is done to help heal the results of that trauma. On the other hand, infections can be infections of opportunity. The whole thing can be a "Chicken 'n Egg" discussion.

    I believe we have to treat as many symptoms as exist and treat the mind, body, and spirit as well. Research into CFIDS is turning up some genetic abnormalities and I suspect that research into FMS will produce similar results.

    I do believe it is helpful to determine the trigger(s) of one's illness(es) and to tailor ones treatment, but if the whole spectrum of these illnesses isn't taken into consideration, it can limit healing.

    Love, Mikie
  15. auntcon

    auntcon New Member

    Keeping a journal is a good point. I know that a lot of my meds make me dizzy, sleepy/drowsy just what a person with CFS needs.

    Stress really lays me FLAT. So mikie is right when he talks about the mental. I'm a negative self talker... I used to be so positive. But now... I'm so Afraid!

    What if I'm in another accident... can't imagine suffering any more pain. I'm always afraid of going out... making a fool of myself because I can't think fast enough... say the wrong thing (COMPLETELY--- sad but true I was so off topic the other day... so embarrassing... it's like having a hearing loss and not keeping up with the conversation.

    CAN'T think of words... I spell them in my mind and then sound them out so they can roll off my tongue. what a process.

    WHAT IF... I get out and can't sit down... get light headed... the list is endless I'm going to start a new thread LOL
  16. JLH

    JLH New Member

    I think those may be 5 possible CAUSES of fms, but not TYPES of fms.

    I, too, live in the Ohio Valley where there is a ton of toxic exposure to the various chemical plants, and I also worked for 30 years at a uranium enrichment plant with highly radioactive materials all over the site (I worked in the administration buildings, though).

    This info is interesting ......

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