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CFS and pain

Discussion in 'Pain and Inflammation' started by Andrew, Jun 3, 2012.

  1. Andrew

    Andrew Senior Member

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    I've been reading the ICC regarding pain. It says:

    I'm not sure if I meet this criteria. What I have is a dull ache in my legs all the time. Sometimes it is so annoying I take a warm bath. But I don't feel the need to seek out a pain doctor. I've also had severe stomach aches. Some excruciating. But these were on and off for a few months. Then a couple years later, same thing. But I don't have them now. I also have sever pain in my jaw joint, that is intermittent. Most of the time I don't have it. It's rare.

    I have pain in my shoulders. It can get bad enough for me to take ibuprofen, or force me to sleep in a different position. But that predates CFS and was diagnosed as arthritis. I sometimes get pain in area of lungs. Which is annoying and scary. But that predates CFS. And then, of course, there are the sore throats. But I don't think that's what they are talking about.

    So I wonder if my pain qualifies as "significant." I'm not even sure what "significant" means in this context.

    Thoughts?

    Also, what is your pain like? Do you even have pain?
  2. SOC

    SOC Moderator and Senior Member

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    My pain has never been severe, but then I have I high pain threshold. I get joint and muscle aches and stiffness that are irritating and persistent and will keep me from sleeping or wake me up at night, but they don't register with me as "significant" pain. At the same time, OTC pain meds don't even touch these aches, so they can drive me bananas when they go on for days, weeks, or even months. I've been told that counts as significant pain, FWIW.

    For me, Cymbalta takes enough of the edge off the aches that about 90% of the time adding an OTC pain medication on top takes care of the aches (although I still have stiffness and joint popping).
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    "...muscle-tendon junctions, joints..."

    I wonder if this definition includes the pain from Ehlers-Danlos Syndrome, which is on my mind at the moment as my SI joint just slipped and I am having a lot of pain. If that is included in the criteria, it will cover a type of pain that is fairly common in ME/CFS.

    Sushi
  4. ukxmrv

    ukxmrv Senior Member

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    What about pain after exercise Andrew?

    I wouldn't have described pain as a major feature of my early ME (acute onset) apart from an awful fluey ache when the viral symptoms come back or a neuropathic pain I got in my "bones and nerves" a couple of times a month. I also wouldn't have described the pain I was in as "severe" as it was intermittant. I also got pain in my lungs for no apparent reason but no headaches until I developed sinus infections.

    What was severe was the terrible pain in my muscules after exercise that had been normal for me before the ME stuck. Can still remember the pain after trying to ride a horse again for the first time. Also when I tried to dance. I had to learn to stop doing this level of exercise to avoid the terrible pain (and the other PEM symptoms).

    Also I wasn't aware of how much pain I was in until a doctor early on used a device with pressure on my muscles (but I had some PEM after travelling to see him).

    The pain did change for me through the illness and it wasn't until I had been sick with ME for 20 years that the severe unremiting every day pain started.
  5. Andrew

    Andrew Senior Member

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    What kind of exercise? Before I got sick I would walk to work from the parking structure. Everyone else rode the shuttle. And I'd do the same walking back. After I got sick I would try to walk the distance and get so sick I had to sit down on the sidewalk. So after awhile, I would try to ride the shuttle. But out of habit, I would automatically start walking. And get sick. It took a long time to train myself to take the shuttle every time. No extra pain was involved in any of this. I also tried to shop and do any number of other things. If by exercise, do you mean jog around the block. No, I never tried that. If you mean mild exercise I was given to keep my from getting blood clots, etc. I did that. But no extra pain with that.
  6. ukxmrv

    ukxmrv Senior Member

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    Maybe you are keeping the exercise low enough to stop the huge PEM pain from settling in? I only noticed the extreme pain after doing something mild for me before ME and major for me now.

    Maybe the walking you did before you took the shuttle isn't enough to trigger that for you? (that's not a bad thing)

    For me the pain was submerged by the viral symptoms but I remember when I saw that ME doctor early on he prodded my muscles with a metal device and it was only then I noticed how painful they were (sharp pain). This was after I had travelled in a plane to see him though (but no strenuos exercise or activity).

    The pain wasn't so bad that I couldn't enjoy a massage though.

    Now I'm in so much pain on a daily basis that I need to take drugs and cannot even bear the pain of a massage. It's getting so long ago that I had the low pain part of the ME now. My CFS doctor thinks I have FM now as well as ME.

    Sorry Andrew my memory is going as well and it's becoming hard to define it properly for you.
  7. taniaaust1

    taniaaust1 Senior Member

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    I used to get terrible pain with the ME. The bedsheets hurt me just to touch me my skin developed a severe hypersensitivity, severe inner bone pain like someone drilling in my bones, bad headaches (back of head, behind my eyes and pain in my eyes, temple pain), very sore muscle pain like I was badly battered and bruised all over.

    I also used to get the migratiing pain.. which used to usually be in my fingers and would go from one finger to another making them really ache (felt like I had arthritis in one place but a couple of hours later it was in another place). This migrating pain used to also move around my body eg below a rib and then later on may be say in my hip. It was very weird.

    I also used to get radiating pain in my body (but now only get that during my period if its bad). Also used to get pain triggered by muscle use (I still can that but its nothing like it used to be and I find the pain quickly nowdays go minutes after as I stop using the muscle but that wasnt the case for me in the past.).

    I had a lot of severe pain for my first few years of ME. I dont know any other illness which produces so many different kinds of pain then the one we have.

    I dont get what I'd call "significant pain" now thou except severe period pain which I take prescription meds for, which may be unrelated to the ME. I also do get headaches (post excertional or due to the POTS) but not often (thou far more then pre ME) so wouldnt probaby say they are significant.
  8. Andrew

    Andrew Senior Member

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    I had to put foam padding on top of my mattress because the mattress was irritating me and I could not fall asleep. And last night I had to stand and walk more than usual, and this made my legs ached about 3 times more than usual. Maybe "significant" simply means "amounts to something" even if it is not severe. I wish they had explained this.
  9. hurtingallthetimet

    hurtingallthetimet Senior Member

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    hello andrew hope your doing better,,, i hurt all the time everywehre...so its hard for me to really give any advice..its so hard because with these illness it seems alot of times comes a milllion other problems and illness...

    i have insomnia couldnt sleep either last few days, but im dead tired...have to lay down after doing anything..took kids to dentist and you would have thought id ran a marathon...ive been diagnosed with rls also and sometimes its weird, im dead tired hurting all over...legs killing me but its like something in me makes me get up and walk and pace...id always thought rls only effected you in bed...

    im not sure you can put a certain label on these illness...they can be so many problems on so many levels..that sometimes come and go...right now for me for last 8 months or so besides all the other pains and problems its been fatigue beyond fatigue after doing anyting..

    i hope you feel better
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Dull ache in legs, that use to be up there with some of my worst symptoms, actually causing me sleep problems in my early years of cfs, almost like shin splints. I use to wake up at 3am and take hot baths etc which helped but sleep would have been good at that time. I also use to use linament on my legs and then put some long football socks on and some tracky dacks(australian for track suit pants) and a blanket on to help keep the heat in from the linament which helped. It drove me absolutely batty those dam leg pains. What works now is neurontin/gabapentine, its the only thing it helps with but its worth it, neurontin never helped with sleep directly or made me groggy or helped with other pains etc but helped my leg pains.

    good luck!!!
  11. August59

    August59 Daughters High School Graduation

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    Same here with the leg pain. Gabapentin, either 300mg or 600mg plus it does help with sleep a little. Sometimes I get the pain with an uncontrallable urge to move them around and my tinnitus will flare up. Then I have to move up and take .5mg clonazapam. I've tried 30 different things for my tinnitus and nothing has any effect except the .55mg of clonazapam. The weird part is that it is in my deaf ear! As far as regular sleep I'm trying 2mg of Lunesta without good results. Takes to long to work, although I let it dissolve under my tongue last night for about 10 minutes and then washed it down with water and it came on a little quicker. I'm sure they will move me up to 3mg next month.

    There is a new sublinguial ambien out that is for people that wake up at 3am and can't go back to sleep. I think it is only about 3.5 mg, but is suppose to start working within like 3 to 5 minutes and last only 3 hours max.! I wouldn't mind having about 30 of them to keep on hand when I wake up like that. There is actually 3 new sublinguial forms of zolpidiem. There is a long acting one called Edluar that comes in 5mg and 10mg sublinguial tablets, a short acting one called Intermezzo that comes in 1.5mg and 3.5 mg sublinguial tablets and I just found a form called Zolpimist that is a oral spray that is 5mg per pump.

    Just noticed in the Prescribing Information that Zoloft could make zolpidiem more absorbable. I had never seen that before. They are really working the patents hard on zolpidiem since the original has expired.
  12. Andrew

    Andrew Senior Member

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    I was just listening to some information about sleep and CFS. Some of it surprising. Instead of trying to summarize it, you can see an hear it here: http://www.cfsknowledgecenter.com/expert-assistance.php. One is ME/CFS Treatment Options Part 1, by Nancy Klimas, and the others have the word "sleep" in their titles.
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    cool site, saved it to favourites and watching now.

    thanks
  14. drex13

    drex13 Senior Member

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    Pain has become a problem for me, but is not constant, it's intermittent. I had to do some work on my truck last month, that required a significant amount of pushing and pulling. I was in pain for 2 weeks after that. I knew as I was doing it that I was going to be hurting, but I didn't think it would last that long. I can totally relate to the mattress being annoying. Sometimes at night, I can feel every stitch in the mattress cover and every spring in the mattress.
  15. liquid sky

    liquid sky Senior Member

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    I have constant severe pain, joints, muscles, spine, head, neuropathy. It started suddenly and has never gotten better in 20 years. I have A DX. of CFS/FMS, so maybe that is why. I have thoughts every day that I cannot endure it, but I seem to get thru somehow, one hour at a time. I really love my friends and family or I would have checked out a long time ago. Also, I want to see the end of this saga and think we are getting much closer to the cause. I sure hope so.
  16. Pegasus

    Pegasus

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    i have pain for 10 years now,it started before ME\CFS,it started as back pain from siting too long at a desk\computer,and it kept progressing until all of my back,neck,jaw,legs,buttocks hurt.
    It got so bad that i couldnt sit in a chair or walk or doing anything without hurting,and it took me long time to actually lie in bed somewhat confortably.

    The most difficult thing and very frustrating (!!!),its muscle tension.
    My muscles work...kinda...but they just get too tight,theyre like that 24\7,i get trigger points and that makes it very painful.
    The problem is,nothing works,it just makes it worse,i cant stretch them,heat \ cold dont work,i tried yoga,pilates,swimming,weightlifting...nothing.

    I´ve had sucess with myofascial release massage (John Barnes approach) and i´ve been having dry needling sessions,once every week for 2 years now,thats working,slowly,also some relaxation techniques.

    does anyone else have this muscle tension \ pain problem?
  17. taniaaust1

    taniaaust1 Senior Member

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    I had over 1hr of weekly massage for about 2 years (when I got to the point where this was tollerable and felt okay..for a long time I couldnt have any massage as it was too painful for me). This weekly massage helped a ton of knots I had all over my body (those knots seemed to all happen with the ME. I did a session of tai chi and developed even more knots). I had sore spots everywhere . Over time.. I could be touched and massaged with more and more pressure and those knots/lumps in my muscles were breaking down. (they were very hard to get to break down whenever I developed one)
  18. PhoenixDown

    PhoenixDown Senior Member

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    Notice how the criteria doesn't include injury-like symptoms, only pain. It doesn't account for pain symptoms that get permanently worse through exercise.
  19. SickOfSickness

    SickOfSickness Senior Member

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    I don't normally have pain pain. I have dull aching, soreness, discomfort, weakness, tightness that hurts, and most other descriptions. I get pain if I overdo it. It's easy to overdo it. I am pretty good at tolerating those kinds of pain. I am bad at tolerating sharper pains.
  20. paul80

    paul80

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    Hi, i was wondering if you got my pm? I thought you might have missed it since you didn't reply.

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