How many here have no pain with their ME?

Discussion in 'Fibromyalgia Main Forum' started by Missizzy, May 27, 2008.

  1. Missizzy

    Missizzy New Member

    I've wanted to post this question for a long long time but I've hesitated. I am completely awed at everyone's ability to soldier through the awful pain this disease usually brings.

    But I have no pain. None. I'm 53 and very limber and totally pain free. I have a zillion other weird symptoms which fit the diagnostic criteria--fatigue, post exertional malaise, tremor, myoclonus, severe weakness, cognitive difficulties, slurred speech, ataxia, dizziness, frequent falling, audiogenic seizures, inability to sequence, (to name a few). I am bedbound 95% of my life and use a wheelchair when I get out which is rarely. But no pain.

    My onset was sudden, like a stroke. In mere seconds, my life changed forever. I've been tested for everything and had multiple MRIs, spinal taps and a fruitless trip to the Mayo Clinic. I've been alternately diagnosed with atypical MS, spinocerebellar ataxia, and permanent damage from an unknown vestibular assault. I just wonder why I don't have any pain like most of you. I am aware of the fact that, as my GP reminds me, you only have to exhibit a certain number of the symptoms on the list to meet the diagnostic criteria. I've just always wondered why almost everyone else experiences pain as a major symptom--with F/M, ME, and with Lyme.

    I feel a bit like a pregnant woman walking into a room of infertile couples. I'm almost embarrassed of my good fortune. I find that I have so much in common with many of you but watch in horror of what you all must deal with concerning intractable pain. My heart goes out to each of you and I admire your fortitude so much.

    If there are others on the board which share this particular difference with me, would you be good enough to let me know.


  2. dragon06

    dragon06 New Member

    Hi there

    I am not sure why you do not have pain, maybe you are just lucky. I myself have FM and CFS and pain is one of my mahor issues.

    Since we don't know exactly what causes these diseases then we can't say for sure why one person has a symptom that another person doesn't.

    Sorry I couldn't be of more help.
  3. Rafiki

    Rafiki New Member

    I have ME and PAIN is not an issue for me. I ache when I have malaise and I get sore in places - knees, hips, etc but it migrates around and is not anything that one would consider Pain. If I overdo, which I seldom have the strength to accomplish, I get sore muscles very quickly. But, I don't even keep pain killers (Tylenol, aspirin, etc.) in the house.

    I have an unrelated nerve pain - trigeminal neuralgia - for which I use topical capsaicin.

    I know what you mean about feeling lucky that you don't have FM and don't have to deal with PAIN. I feel the same way ~ grateful! But, you know, I think you feel plenty bad enough!

    Peace to you,

  4. Chilene

    Chilene New Member


    i sort of feel like you! i am 43 and mine came on at 30.

    and, like you, all my weird stuff seemed to happen structurally, very quickly, as if i'd had a stroke! (i'm still not convinced that i did not). you are the first person on this board that i've heard use that comparison.

    i had a bunch of strange/very scary stuff (dizziness, weakness, pain, minor loss of coordination, numbness, optic neuritis, bladder issues and (in the beginning)strange sensations on my skin alot... that came on mainly on my left side--then later some of my right-- over a period of 1-2 days) that never left. they thought i had MS for 3 years and then ruled that out (still unsure of that, too).

    after a minor whiplash a few years after this, i did develop migraines, daily for a few years (but i believe that comes from the herniated discs/spinal stenosis). i AM sensiitve to touch, sound, light and everything else... but i also would not say that i am in constant pain. i, too, get unnaturally tight muscles and then pain after much exercise... but that's not too often. for me, it's mostly (horrid) cluster migraines or nerve pain from herpes. and more like others with cfs... i feel very flu-like after overdoing things.

    i'm sorry to hear that you are bedridden so often. that IS painful, i'm sure, emotionally. (i'm not bedridden, but single and isolated alot).

    (thanks for making me feel less alone with my similar situation!;)

    many hugs to you, hope and blessings.

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  5. mamapepp

    mamapepp New Member

    me/cfs since June 2005. Never had what I would consider pain. Fatigue, post exertional malaise, insomnia, congnitive problems; as most of us too many symptoms to list. Disabled almost immediately, but no pain.

    Pain from herniated disks in my neck. Some muscle and joint aches but nothing like the pain that is so often associated with me/cfs.

    I consider myself very fortunate not to have pain.
  6. foggyfroggy

    foggyfroggy Guest

    Missizzy I'm glad you asked that question. I think we are a subset - maybe we should form a club ;-)

    My onset was much like yours and Helenes. Sudden, and neurological. I also have no pain, or at least not the type of physical pain I hear described on this board. I also was completely bedridden for a couple of years. I am sloooowly getting better but still use a wheelchair when out in public at all. Most of my meds are aimed at trying to control the seizure and CNS stuff. I have much the same neuro symptoms as you and Helene (I hope I haven't spaced the name, I didn't write it down)

    I often "don't feel good", and I'm "uncomfortable" but not "in PAIN". If that makes any sense.

    LOL at your infertility analogy!

  7. erica741

    erica741 New Member

    No pain ever for me either. However, I have been sick with CFS/ME only 2 years, and have heard that the pain symptoms can come with time.

    I do get sore muscles for a few days after any sort of overexertion (like Rafiki described). But to me, that symptom falls into the "post-exertional fatigue" category.

    I have not experienced (nor can I relate to) the types of pain people describe on here, but I still really feel for those that deal with pain on a daily basis.

    However, like with you, for me its a mixed blessing. Whereas many people on this board who suffer from pain are able to work, exercise, and have some sort of life (though likely with the assistance of pain meds), I am almost completely housebound due to extreme fatigue.

    I've also recently been diagnosed with lyme, for which pain is a common major symptom. For a long time, I thought I couldn't have lyme because my symptoms were so viral-like (fever and fatigue/malaise).

    But from the research I have done, your symptoms do sound like classic lyme. I assume you have already been tested for lyme? If you haven't done so already, you may want to get tested through Igenex lab, which is supposedly the best at detecting chronic lyme disease. Many of us who tested negative on other tests finally found out we have lyme after getting tested through Igenex. I can give you more info if you are interested.


  8. Gnomie

    Gnomie New Member

    I also have no pain and have been sick for 14 years. I had pain in for the first couple of years in acute phases but my symptoms seem to have altered since then.
    All my CFS friends have severe pain so I count myself very lucky. My main symptoms are fatigue, gastrointestinal problems and cognitive probs.

    You really are a positive and gracious person Missizzy to say you feel grateful when you are 95% bedbound!!
  9. mindyandy420

    mindyandy420 New Member

    well not to a T but who here actually experiences the same symptoms with the same duration and same levels. I can say I dont really experience pain. Pain to me is hurting all the time...constant. I experience muscle fatigue and sore muscles from time to time. Sometimes more bothersome then others. I do not experience pain.

    I share some of the same experiences like you...Mine are mainly congnitive issues. I have for the past year experience several strange sensations such as you put "stroke" like...I'm 30 years old. I am however so far very fortunate that I am not bedbound and I can still continue to work fulltime and do most things normally. I do have times where I really struggle but I can usually manage....Like I said mine is more "cognitive" issues. My sx seem to come and go the severity depending on the day.

    I do must admit...I HAVE NO DX. No doctor seems to understand my problems. I have been thru test after test after test. All come out fine. I am still working on finding a doctor to help me. I am about 95% sure its CFS/ME....BUT WHO KNOWS. I have all the symptoms....even the os...??? that word where when you stand up or sit up to fast you get dizzy and can faint....STARTS WITH ON O... Yeah thats what I get...hypotention whatever.....

    SORRY ENOUGH WITH ME.....I just wanted to let you know that I have no pain....I hope that I dont get FM.
  10. Missizzy

    Missizzy New Member

    I can't tell you guys how much this means to me. I do feel as if you understand. I try to be positive but know that the terrible pain devil could hit at any time.

    And, yes, I've been tested for Lyme by the Igenex labs. Nope.

    The numbing fatigue, the total exhaustion, and the absolute weakness are what keep me down. Gretchen and Helene, it sounds as if our onsets were very similar. I agree with many of you that it is uncomfortable but not really painful. I often sigh and think "uh, I feel so awful" and then I remind myself "duh, Girlie, you've got ME".

    I'd love to hear from anyone else experiencing this form of ME.

    Once again--hugs,

  11. labrat

    labrat New Member

    I also have CFS with no pain. My main symptoms are postexertional fatigue, sleep problems and cognitive problems. The fatigue was what disabled me.
  12. PainPainGoAway

    PainPainGoAway New Member

    I appreciate this thread, even though my name betrays me, as I have lots of it.
    I am curious about the different levels being mentioned...and how many years has it been in your life, this CFS/ME, or lyme.
    Have any of you recovered enough to be able to drive, walk unassisted, do basic things like maybe fix dinner.
    If so, how long to get some abilities back?
  13. Chilene

    Chilene New Member

    suthern girl--

    thanks for your insights about lyme disease. i know i should get tested for that again. i was tested about 12 years ago (was negative), and am pretty darn sure that it was not the test that you mention here. it was a standard lyme test through my doctors office, i believe.

    i was bitten by a tick way back at 15, but didn't get sick til 30, so who knows (though a few symptoms, VERY few, might have been around in my 20s). hope drugs aren't the only answer if i end up with Lyme; i am now having bad allergic reactions to every drug/herb/etc. on the planet.

    just to get back to you on my level of mobility. it's hard for me to say clearly about how much i can or cannot do, as most days, i'd never get out of bed without much hell... but i am able to force myself every day to somehow get up (living alone is part of this!)and most days get out a little. for a few years, i forced myself to work 3/4 time. then very part time. now i choose to get more sleep at night and do sporadic art shows. receive disability but it's still rough, family tries to help financially. i do drive (not sure i should with my imbalance, etc., but easier than public transportation). i have never used a wheelchair (except at the airport), though probably should for large grocery stores. have assistance with laundry- and sometimes with groceries. sure wish i had help with meal preparation!

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  14. tgirl

    tgirl New Member


    I've had CFS for nearly 20 years. and can't say I have a lot of pain. I do have a constant ache that fluctuates, but it's not as bad as what I see described as fibro pain.

    It's more like a deep flu ache, and feeling of stiffness, it's not pleasant but I don't take pain pills for it. Then again I have a high pain threshold, so who knows. A few years ago I had one glorious morning without the ache and stiffness, it was quite wonderful and amazing. Maybe I'm just used to the feeling?

  15. LittleBluestem

    LittleBluestem New Member

    I have had ‘flu onset’ ME/CFS for over 20 years. I do not have any pain that I think is attributable to it. I have some neck, upper back, and shoulder pain (not uncommon in people with ME/CFS) that I think is due to underactive adrenals (also not uncommon with ME/CFS). I have some myofascial trigger points that are not severe (and would be less so if I worked on them regularly) and that I think are related to my life before ME/CFS.
  16. greatgran

    greatgran Member

    I have more the symptoms you described , however I have body aches if I over do . I do not have the pain others speak of .

    When I was first Dx with CFS I had no pain at all except for headaches. Now, if I overdo most of the time I have ahcy legs, like ache to the bone pain.

    If I had to choose I would take the pain ovet all the other symptoms, weakness, fatigue, dizziness etc.

    This DD is so strange I doubt my Dx so often.

    God Bless,
  17. Rafiki

    Rafiki New Member

    I do not expect to develop FM. I've had ME for 29 years this fall.

    Aching, and what someone described as a horrible "to the bone" ache (know that!!!), are a regular part of my life. I also have myriad little neurological jibs and jabs from time to time, which are more sensations than pain, and a history of pain from structural problems which settled down with time but I never developed a "pain syndrome" -- turn around 3x, spit, spit!

    Like you, I am quite disabled by ME. It's more than enough to deal with. Please don't worry about developing something else. We can spend so much time fearing something that never happens.

    Peace to you!!!
  18. Missizzy

    Missizzy New Member

    Rafiki--You described the neuro part of the DD perfectly--jibs and jabs. And I assure you, I don't lay around worrying over the pain. I worry more about all the lovely people here who do suffer it. I figure that that if pain was going to strike it probably would have by now. Those jibs and jabs and jerks and sharp but fleeting pains (yes, pains--but so swiftly coming and going) are a part of my life. You really have to acquiesce to it and laugh or you'd cry.

    Speaking of the feeling of death. I've noticed that comment frequently in posts and I do relate to it. Once, years ago, I hemorrhaged one week after having my first baby. The doctor misunderstood how far I was from a hospital (35 miles) so I ended up at home far too long and almost bled to death. I vividly remember my husband and my mother hovering around my bed and seeing my newborn son. I knew I was dying but I didn't care at all. It was so perfectly peaceful. I just got weaker and weaker. I was actually upset when all hell broke loose and I was rustled into the car and raced to the hospital for emergency surgery. I just kept saying "just leave me alone". That is how I feel frequently on bad days--like my life blood is just draining away. I don't move and even breathing is hard. I'm not asleep but in a different place. It's very peaceful. I've prayed that if ME does take me, this will be the way it happens.

    Emotional pain. Oh yes. It's clear that those of us who don't live with the constant physical pain still suffer from the emotional. It took me at least two years to wrap my mind around this new world and life, to re-invent myself into someone I could live with. As I'm with me quite a bit now!!

    This board has changed my life so much. I follow all your stories and feel I know so many of you. It's true that there are indeed many subsets of us but we share many commonalities. Oh, how I'd love to meet you all and truly exchange those gentle hugs. It is so refreshing to come to the board and know that you will not be judged and best of all--you will be believed.

    Hugs to each of you,

  19. tansy

    tansy New Member

    and other longstanding ME specialists, quote approx 70% have severe pain; so that leaves 30% who don't have the muscle, joint, and neuropathic pain as a Sx of ME.

    Gary Franklin, a former speedway racer, described the pain of ME as being far worse than anything he'd experienced previously even when his inevtiable injuries were considered very painful.

    So I guess not having pain is one thing to be grateful for if you've been one of the lucky 30%. I was one of the unlucky 70%.

    tc, Tansy
  20. Rafiki

    Rafiki New Member

    70%! That makes me want to put my fingers in my ears and hum!

    Missizzy talked about not wanting the "pain devil" to hit which I think is so apt. I try to not even think about pain for fear of bringing the evil eye. It is bad enough without dealing with PAIN pain.

    70%! I just assumed it was probably the other way 'round. 70% OMG! I'm so lucky!

    Plugging ears and humming!