Fm pain vs. ME/CFS pain. Is there a difference.

Discussion in 'Fibromyalgia Main Forum' started by gapsych, Dec 21, 2008.

  1. gapsych

    gapsych New Member

    Hi all. In my continuing quest to find out all I can about my DD, a question comes to mind.

    Is the pain from ME/CFS different from FM or is it an individual type of pain. I kind of think it may be that as we all react differently to so many things. But I am curious about this.

    The pain I get is a deep achy pain in my arms, legs, but less in my upper back and chest.I am so achy and the aches go down to my bones. The pain/aches do not limit my range of motion nor do I get stiff unless I am in bed too long. It is like the achy feeling from costochronditis but much worse. As most of you experience, it is draining.

    I would not only be interested in what kind of pain you have but also what your DD is.

    Thanks in advance.

    Happy holidays to all and to all a good night's sleep!!!!

    [This Message was Edited on 12/23/2008]
  2. hea

    hea New Member

    I was trying to figure this question out myself. I was diagnosed with CFS, then FM a few months later. My pain is mostly a deep achy pain in every muscle, like a really bad flu that never goes away. Sometimes I feel like the pain is in my nerves, but have no way of knowing if that's where it is. I get a little stiff too after sleeping or inactivity but don't have the tender points that is supposed to accompany FM.

    Have a lovely holiday!
  3. astroherb

    astroherb New Member

    That is a good question and I have often wondered the same thing. I have FM only. The pain I feel is also a deep, achy pain, especially in my thighs and legs. It makes me feel very tired.

    However, I also have pain in my shoulders and neck that is sharper--though I think it is mostly from sitting at the computer at work.

    The third kind is a very, very sharp pain in my upper arms that comes on suddenly when I move my arms wrong or life them. It is so sharp it takes my breathe away. That seems to be what is so strange about this disease--the pain moves and changes. However, the deep, achy pain never leaves though I am slowly getting better.

    Now if we could just get a doctor to ask a question like you just did maybe we would have a better chance of getting medical help. Sigh!

    Take care.
  4. Janalynn

    Janalynn New Member

    I have FM only. My pain is sometimes so severe that all I can do is lay and cry and hope to fall asleep.

    Unless a person has had that kind of pain they can't understand why someone would want pain medication. You just want out of your body. I made it for many years taking nothing but Tylenol, but it got to the point that I could not take it anymore.

    My legs have always been my worst area for pain. From my hips, thighs, knees, shins... (well that about covers the whole leg).
    When it first starts to hurt, it starts with a deep ache. - to the bone I would say. I have often described it as bone pain. My doctor says it's the 'things' around the bone, not the bone itself. Lately, the back of my thighs (the muscles) have been particularly bad so I spend a lot of time sitting on a heating pad.

    I have always had leg aches as long as I can remember. If I don't get enough sleep, my legs ache, if I wake up in the middle of the night, I wake up to horrific leg aches/pain. Again, you can't get away from it. I also sometimes have knee pain, not aches. It feels like something is twisted wrong in there. Boy it's hard to describe pain.

    It feels like someone has beat the crap out of my legs over and over again. They are also very tired. I walk gingerly most of the time because of the way my legs feel. When I am having a really bad days, the pain moves to my forearms. THEN I know I'm in trouble.

    For those that have minimal pain, you're lucky. Living with pain is horrible.

    I really don't know what kind of pain comes with CFS. I know that I am often fatigued but I don't think if near the degree that people with CFS are. I do not go far from my home. I work but that's about all I do. I crash on the weekends.
  5. gapsych

    gapsych New Member

    Something I failed to mention is that I tested positive for 18/18 tender points.

    It really is hard to describe the pain. I never get sharp pains.

    I also have Restless Legs Syndrome and the unpleasant sensations are very much like the pain I have from the FM/ME.

    Have you investigated RLS? One of the medications used for this has been shown to also help with Fibromyalgia pain.

    Take care.

  6. Bunchy

    Bunchy New Member

    I have many types of pain:

    1. Constant severe muscle stiffness that is worse after sleep and inactivity but is even worse if I overdo it - I have to strike a careful balance between rest and activity. This is mostly in my back, shoulders and hips.

    2. Tender muscles all over most of the time

    3. Skin pain (from nerve endings) all over - varies in severity

    4. Flu-like aching during flares of illness

    5. Load-bearing pain where pain arises due to standing or sitting upright in my back.

    I have a lot of pain all the time but it varies from day to day and year to year. I have ME and tested for ten out of eighteen tender points so although not officially an FM'er, I have symptoms of both illnesses plus MCS.

    Love Bunchy x
  7. DeborahLynn

    DeborahLynn Member

    I have both ME/CFIDS and FMS; my pain has grown over the years from flu-like aches and pains to severe pain from the surface of my skin to the depths of my bone. They say that when a person has both diseases, their pain is more severe... I believe it; my pain is very, very severe and unbearable. I am on strong pain meds, after much prayer and debating over it in my mind.

    I am in so much pain and am so very weak. I had to quit working in October of '05. I have been growing worse and worse.

    I had my thyroid checked, and tried many, many supplements and "cures", but so far, I haven't found the cure for me. I lean heavily on my Husband and family and on my Lord most of all.

    Prayers and Merry Christmas to all! Debbie
  8. gapsych

    gapsych New Member

  9. Bailey-smom

    Bailey-smom New Member

    I see you have not given up about the GE - maybe the reason you do not have as much pain as everyone else is because you do not suffer from the same ailment??

    I too have wondered the differences between CFS & FM - there seem to be more similarities than differences between the two.

    I suffer from all over body aches/pain that is dabilitating (?) at times. With all the pain comes the exhaustion. I have only been diagnosed with FM.

    I do not mean to sound rude by the above statement but it appears the board has changed considerably.
  10. gapsych

    gapsych New Member

  11. gapsych

    gapsych New Member

    While I am not sure if GE helps, there are people on the board who have not been helped by it.

    We are all different in what works for us.

    It can be difficult to sort out the factors that are TRUELY making us feel better or worse.

    Take care.

  12. jmq

    jmq New Member

    Hi Gap....

    I wondered the same. My pain is very much like yours except I would add a burning pain sensation too. I also have a new severe pain in both my feet but it is only reallllly bad in the mornings or if I am on them too long. They feel hot and if I dare put any pressure on them, I feel a sharp pain that I can barely walk with

    I have been on Lyrica and it has helped. I have a few decent hours more frequently. I will take it!

  13. spmom

    spmom New Member

    This is a great question. The main reason my FM diagnosis took so long is that my pain symptoms were not "typical" of FM, meaning the achy, stiffness that was used in diagnosis. The best way to describe my pain was like an electrical storm in my body with deep, searing, burning pain that migrated from moment to moment. At the time, no doctor understood what I was talking about. The pain, as well as all of the other symptoms, are so unique to each person.

  14. spmom

    spmom New Member

    This is a great question. The main reason my FM diagnosis took so long is that my pain symptoms were not "typical" of FM, meaning the achy, stiffness that was used in diagnosis. The best way to describe my pain was like an electrical storm in my body with deep, searing, burning pain that migrated from moment to moment. At the time, no doctor understood what I was talking about. The pain, as well as all of the other symptoms, are so unique to each person.

  15. TigerLilea

    TigerLilea Active Member

    at least in my case. I have CFS only and I only get pain when I am actually moving and doing something. An example would be when I climb stairs. By the time I get to the top of the stairs, my leg muscles absolutely burn. However, once I stop climbing the stairs, the pain goes away almost immediately. Same goes for something like combing my hair. My arms hurt while combing, however, once I stop the pain goes away within seconds.

    With CFS without FM, there isn't the trigger point pain that people with FM get.
  16. karynwolfe

    karynwolfe New Member

    Okay. I have both CFIDS/ME and Fibromyalgia. I've had the M.E. go into remission and only had to deal with FM-related pain. Then the M.E. worsened considerably while the FM hasn't been very prominent. But, despite being what would seem to be a good candidate to explain the differences, I'm still finding that very, very hard. =\

    In the beginning for me, when the M.E. and FM were both raging, the pain was unbearable. I can only describe it as.. wanting to stab yourself so you could at least have somewhere to focus your attentions, because the pain was.. everywhere. It hurt to lie in bed, to stand, to sit, to move, to not move, to have anything brush against my skin, and it never let up. Pain meds were of little help.

    I think FM mostly affects my tendons and ligaments near my joints, but never the joint itself. M.E. pain can be very arthritis-like. FM pain is also very prominent surrounding the various 18 tender points (half of them are around your neck, back, shoulder area). ME pain is.. more well-rounded, if that makes any sense. It includes the migraines, occipital neuralgia headaches, and these new types of headaches that are near impossible to get rid of; it's very muscular, and I think it feels like if you had a horrible case of the flu; it's pain in your chest; it's pain in your lymph nodes, if they're swollen. That sort of thing.

    Also, ME pain is worsened by exercise (physically, mentally); it's typically the worst when the person first falls ill and the severity of the pain tends to decrease over time. FM pain can be reduced by slow stretching, etc., but tends to get worse over the years, despite the condition not being degenerative.

    I'm not saying any of this is law, but those are the patterns I see.

  17. dani78xo

    dani78xo New Member

    I have both CFS and FM, but the CFS manifested itself first. With the CFS, I didn't have any pain at all. I was just tired all the time. The pain I have now though is mostly in my knees. The inner part of my knees hurt all the time, one more than the other, and if I do a lot of walking, that pain will extend from my hips to my ankles. It's not just a dull ache, either.

    I'm pretty much always achy to some degree all over, though. I just don't notice it a whole lot unless it gets real bad since it's kindof commonplace to me now.
  18. greatgran

    greatgran Member

    I do think CFS pain is different than FM, I have deep achy pain to the bone especially in my hips, tighs and upper legs. I do not have the stiffness or muscle pain that those with FM speak of. The rheumy says I have FM . I am not sure what I have at times, all I know its misery.

    The pain doesn't bother me as much as all the other feelings, such as fatigue, weird head feelings, off balance, Sinus problems ( I think its Sinus) I feel I have an infection all over my body. I could go on and on but if the anxiety/depression would go I could deal with all this better.

    Its miserable,
  19. tut90

    tut90 Member

    I was diagnosed with FM and I also have arthritis. I have pain all over my body, deep muscle plain, sharp pain, at times it feels like a burning pain. I have to wear the softest pajamas possible, because everything bothers my skin.

    The tender points, especially in my back can't even be touched, because the pain is that extreme. Most days I feel exhausted due to all the pain. I've started taking the MSM and D-Ribose supplements, to see if it helps some

    Now lately, I have been experiencing sore throats, I sound hoarse and at times I lose my voice. I don't feel any gland swelling, but a feeling like if I'm coming down with the flu. I don't know if this is part of the FM or if I have CFS also.


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