lancelot
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Is there anyone else here like me?
Who has severe and disabling CFS/ME without Pain?
- Thread starter lancelot
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Wayne
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Hey Lancelot,
Just wanted to caution you that you many not get very many replies to your inquiry (of course, I could be wrong). Even though I deal with chronic daily headaches, I still feel somewhat fortunate that my pain isn't worse. Many stories here indicate that it easily could be.
Wayne
lancelot
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I don't have any pains other than the tender lymph nodes around my neck, chin, ear, and armpit when pressed. No muscle, joint, headaches, or sore throat pains, but have all the other major symptoms as outlined by the Canadian Criteria. However, they list severe myalgia as #3, but say a small number has no pain yet can be considered a diagnosis of CFS/ME if they had an infectious/flu-like onset while mine was a gradual non-flu onset. confused as hell.
Anyone?
alex3619
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Hi
I have had the spectrum - severe pain has included extreme muscle pain (not joint, but often joint supporting muscle), headaches, migraines, gut pain, chest pain, neuropathic pain etc. I have also had just as painful sensations that can't really be called pain, including nausea, vertigo, disordered sensory capacity and burning sensations in particular. All this without getting into neurocognitive issues, which belong in another post.
Since I found methods to quiet my immune system, the headaches have mostly gone (except for a once a year three week headache) and my muscle pains have died down - except for when I am forced to be too active.
Much of this returns when I violate the rules I have developed for myself, such as eating too much polyunsaturated fat (which induces generalized pain, chest pains, flu-like symptoms). Many also return if I overdo things: PEM.
The rest of the time, aside from some annoying background pain, I am not in any severe pain now. This was not true for about fifteen years however. So I think CFS or ME has a spectrum on this, and can present differently in the same patient at different times. On the other hand, my general trend for "fatigue" - chronic exhaustion is more apt - is worse and worse.
Bye
Alex
I have had the spectrum - severe pain has included extreme muscle pain (not joint, but often joint supporting muscle), headaches, migraines, gut pain, chest pain, neuropathic pain etc. I have also had just as painful sensations that can't really be called pain, including nausea, vertigo, disordered sensory capacity and burning sensations in particular. All this without getting into neurocognitive issues, which belong in another post.
Since I found methods to quiet my immune system, the headaches have mostly gone (except for a once a year three week headache) and my muscle pains have died down - except for when I am forced to be too active.
Much of this returns when I violate the rules I have developed for myself, such as eating too much polyunsaturated fat (which induces generalized pain, chest pains, flu-like symptoms). Many also return if I overdo things: PEM.
The rest of the time, aside from some annoying background pain, I am not in any severe pain now. This was not true for about fifteen years however. So I think CFS or ME has a spectrum on this, and can present differently in the same patient at different times. On the other hand, my general trend for "fatigue" - chronic exhaustion is more apt - is worse and worse.
Bye
Alex
Last week I wouldn't have said me - I have had inflammatory back pain linked to my ME - but I recently had a physiotherapy consult, have avoided lying flat on my back for long periods as a result, and the pain has gone away. So although the pain was linked to my ME, the link appears to have been indirect (to do with ME forcing my to adopt a posture my back didn't like). I am housebound and spend most of the day on the sofa with my feet up or lying down and am on the knife-edge of independent living (in fact I've recently bought in some help) so I'd consider myself to have severe and disabling ME.
My ME came on with an acute flu-like illness; put me in bed for a long stretch of years, also without pain (except sore throats and general fluish feeling all over the body for about 18 months to start with); followed by several years in partial remission; followed by a major and continuing relapse four years ago. I've considered myself lucky that pain isn't a symptom for me. I have the other classic symptom of delayed fatigue if I push it; and I'm certainly made worse by exercise.
Wayne mentioned that you might not get many replies; it will be interesting to see. With all of these things, we have to remember that it's probably largely the most severely affected who come to PR and this forum, and those with additional debilitating symptoms such as pain might be more likely to do so.
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Bear with me... bad day...
I'm ME/CFS without Fibromyalgia. I don't get much pain - but I am pretty disabled with overwhelming and "painful" fatigue. IE., I am so tired, it HURTS...but not in the way you would normally think about pain. More like a molasses, can't move, holding a pencil is too much work, fatigue - and even lying in bed feels like being imprisoned in your own body fatigue. Ocassionally, I get aching joints and headaches ...but again, not usually severe. My main symptoms are fatigue, night sweats, sore throats, swollen lymphs, IBS, weight loss, cognitive problems, word loss/retrieval, and memory loss, etc. I am probably at 30-50% functionality with meds... totally disabled without them.
Hoping that changes SOON!
Personally, I always think of pain as "sharp, shooting, stabbing pain" (like cramps!). Maybe it depends how you define it?
I think there are actually lots like us. But this disease can be very different for loads of people ... it also may depend what co-conditions you have, age, general overall health, length of illness, luck, etc... ? (The same way two MS patients may have very different courses and experiences with their disease...)
I'm ME/CFS without Fibromyalgia. I don't get much pain - but I am pretty disabled with overwhelming and "painful" fatigue. IE., I am so tired, it HURTS...but not in the way you would normally think about pain. More like a molasses, can't move, holding a pencil is too much work, fatigue - and even lying in bed feels like being imprisoned in your own body fatigue. Ocassionally, I get aching joints and headaches ...but again, not usually severe. My main symptoms are fatigue, night sweats, sore throats, swollen lymphs, IBS, weight loss, cognitive problems, word loss/retrieval, and memory loss, etc. I am probably at 30-50% functionality with meds... totally disabled without them.
Hoping that changes SOON!Personally, I always think of pain as "sharp, shooting, stabbing pain" (like cramps!). Maybe it depends how you define it?
I think there are actually lots like us.
But this disease can be very different for loads of people ... it also may depend what co-conditions you have, age, general overall health, length of illness, luck, etc... ? (The same way two MS patients may have very different courses and experiences with their disease...)
For years I had very severe CFS with no pain apart from headaches and sometimes sore, swollen lymph nodes. For 3 years I was bed ridden and for two of those I don't recall any body pain. I did have very severe headache for most of the time. In later years I have started having awful pain nearly all the time, all over my body, as well as headaches all the time.
So, yes, there are people like you. CFS doesn't necessarily come with pain. Try to make the most of this time without pain, because it can come and then you are a whole lot more incapacitated.
So, yes, there are people like you. CFS doesn't necessarily come with pain. Try to make the most of this time without pain, because it can come and then you are a whole lot more incapacitated.
Nielk
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Lancelot,
Count yourself really lucky!
Don't get me wrong.
This illness without the pain can be horrible with sleep problems, overwhelming fatigue, POTS etc..
I, personally, Have not had ONE DAY without pain since I became ill 7 years ago.
Hi Lancelot, i think, as has already been shown, that the pain issue is not straightforward. I have M.E without Fibro and would have said 6 months ago that i dont have pain, and i am at 30 % functioning (housebound but not bedbound) I certainly dont have that awful day in day out debilitating pain that meds cant control.
However, what i have come to realise is that when i was first ill but undiagnosed, 15 years ago, i did have lot of pain for a long time and had to take painkillers regularly, then i went into a long remmission where i was atabout 70% functioning, but as i was ubdiagnosed i thought this was normal. Now i have been very ill again for about 3 years and pain has not played a major part. Like you i wondered if it was possible to have M.E and not have chronic disabling pain. What i now think is that i do actually have regular pain, of diering types that i can deal with because it comes and goes, especially depending on wether i rest enough or too much etc.
I now have headaches off and on, lymph node localised pain, sore throats, severe eye pain occassionally if i am really unwell, fluish aching etc. i now see that i do have pain regularly, but it is not usually severe muscle pain (at this point)
Sorry a bit rambly, but like most things with M.E we all seem to be a little different. BTW i ha a gradual onset of worsening symptoms, but may have been trggered by illnesses as a child as i had so many of them, it is hard to say i it was gradual or sudden onset (if you see what i mean?)
However, what i have come to realise is that when i was first ill but undiagnosed, 15 years ago, i did have lot of pain for a long time and had to take painkillers regularly, then i went into a long remmission where i was atabout 70% functioning, but as i was ubdiagnosed i thought this was normal. Now i have been very ill again for about 3 years and pain has not played a major part. Like you i wondered if it was possible to have M.E and not have chronic disabling pain. What i now think is that i do actually have regular pain, of diering types that i can deal with because it comes and goes, especially depending on wether i rest enough or too much etc.
I now have headaches off and on, lymph node localised pain, sore throats, severe eye pain occassionally if i am really unwell, fluish aching etc. i now see that i do have pain regularly, but it is not usually severe muscle pain (at this point)
Sorry a bit rambly, but like most things with M.E we all seem to be a little different. BTW i ha a gradual onset of worsening symptoms, but may have been trggered by illnesses as a child as i had so many of them, it is hard to say i it was gradual or sudden onset (if you see what i mean?)
I had ME without Fibromyalgia type pain if that is what you mean?
My onset was an acute viral one and pain wasn't major - part from that all over fluey soreness and the pain in the lymph nodes and from the swollen throat. Then after that onset I had the post exertional muscle soreness with exercise, when I was able to actually get out of bed.
Sometimes I would get attacks of a all over nerve type pain but that would be for a few days at a time and then calm down. I always felt lucky as other PWME were in such severe pain but not me.
This changed and after 20 years of the viral ME with no severe pain, the FM trigger points / stiffness and intense pain started. The nerve pain also come back as a longer and stronger feature. Feels like a "new" disease on top of the ME symptoms as so different. It's strange how the ME symptoms react to heat in one way, and the new FM symptoms in another.
XMRV+
My onset was an acute viral one and pain wasn't major - part from that all over fluey soreness and the pain in the lymph nodes and from the swollen throat. Then after that onset I had the post exertional muscle soreness with exercise, when I was able to actually get out of bed.
Sometimes I would get attacks of a all over nerve type pain but that would be for a few days at a time and then calm down. I always felt lucky as other PWME were in such severe pain but not me.
This changed and after 20 years of the viral ME with no severe pain, the FM trigger points / stiffness and intense pain started. The nerve pain also come back as a longer and stronger feature. Feels like a "new" disease on top of the ME symptoms as so different. It's strange how the ME symptoms react to heat in one way, and the new FM symptoms in another.
XMRV+
XMRV+ - your experience is very similar to mine. First 20 years of illness, no pain, just flu like malaise and extreme weakness. Quite well for 12 years after being mostly bedridden for 8. Then a minor ski-ing accident triggered widespread pain, which has got worse and worse over the last 8 years. As you say, it feels like an additional new disease.
Jenny
Jenny
*GG*
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Ditto, I became ill over 7 years ago and have chronic pain, better recently, but still no fun!
The first time I became ill following a viral attack I did not have any pain - all the other symptoms though, but didn't realise it could be worse (do we ever).
I recovered for a few months and another virus got me, since then pain has come through FM, joint and muscular pain at points all over my body, also the burning sensations which come and go. Possibly just which virus or combination you have and how it/they affects your body.
I recovered for a few months and another virus got me, since then pain has come through FM, joint and muscular pain at points all over my body, also the burning sensations which come and go. Possibly just which virus or combination you have and how it/they affects your body.
C
Cloud
Guest
CCD: "There is a small number of patients who have no pain or sleep dysfunction, but no other diagnosis fits except ME/CFS".
I've had Mod-Severe ME/CFS without pain for almost 17 years. Had sleep problems in early years only.
I've had Mod-Severe ME/CFS without pain for almost 17 years. Had sleep problems in early years only.
slayadragon
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As always, my perspective from my journey down the rabbit hole gives me a different perspective on this from everyone else.
Early in my illness, I had some mild trigger point pain (e.g. feeling like stiff hamstrings). After a few years, this went away. (I wonder now if that could have been related to my starting on the anticonvulsant drug Lamictal.)
For a short while when I was doing a trial of an antiviral, the trigger point pain returned, to the point where I could barely walk. Then it went away again (as I got sicker).
After I moved out of the moldy house, went to the Godforsaken desert, and started detoxing like crazy (with the help of cholestyramine and methylation support), the trigger point pain returned. This was problematic not so much because it hurt unbearably, but because it clearly was related to my detoxing effectively.
What I now believe is that the trigger point pain is due to the fascia being all "gummed up." William Rea talks about this concept in his book. Enough toxins turn the fascia (which should be sort of a gel consistency) hard (more like a cross between styrofoam and stuck-together saran wrap), thus impeding the lymph and electrical impulses (and to a lesser extent the blood) from flowing through. One interesting thought here is that gliotoxin (a toxin made by candida and aspergillus) substitutes for glutathione in the fascia, making it all gummy. But other toxins might affect it as well.
I've managed to address this problem with neural therapy and other bodywork. Lymph massages are supposed to be helpful too. One thing that's also helped is a probiotic called ThreeLac. I hate to sound like an ad, but this seems to have a much better effect than other probiotics. Most probiotics have Lacto bacteria in them, which is inflammatory. This one appears to be anti-inflammatory. Rea suggests that inflammation can be an issue with the fascia, and controlling yeast (which could be part of the goo since it spreads throughout the body) seems only helpful as well.
The toxins flow out much more freely now that my fascia is in better shape. I'd never have gotten anywhere with them if I'd not addressed that component.
RE not having pain throughout much of my illness: I feel sure that for many years during my illness, I was releasing no toxins whatsoever due to my severe methylation block and heavy mold exposure. (The body refuses to release stored toxins when the external toxic exposure is high.....the combination of the two is too stressful and a natural defense mechanism kicks in, I think.) And if there are no toxins that are on their way out, it doesn't particularly matter if the fascia is gummed up in terms of pain. (Electrical impulses and blood circulation is impeded, but those don't create pain.)
I believe that severe headaches in CFS are associated with the stuff I'm now calling the "?" (an outdoor biotoxin that made me really sick last summer in Lake Tahoe). My belief is that if people are getting severe headaches on a daily basis, and especially if they're severely sick in other ways, they might want to consider moving out of the area. Whether the home has mold in it is irrelevant, if that's the case.
Of course, no one has to believe anything I say about any of this....
Best, Lisa
Early in my illness, I had some mild trigger point pain (e.g. feeling like stiff hamstrings). After a few years, this went away. (I wonder now if that could have been related to my starting on the anticonvulsant drug Lamictal.)
For a short while when I was doing a trial of an antiviral, the trigger point pain returned, to the point where I could barely walk. Then it went away again (as I got sicker).
After I moved out of the moldy house, went to the Godforsaken desert, and started detoxing like crazy (with the help of cholestyramine and methylation support), the trigger point pain returned. This was problematic not so much because it hurt unbearably, but because it clearly was related to my detoxing effectively.
What I now believe is that the trigger point pain is due to the fascia being all "gummed up." William Rea talks about this concept in his book. Enough toxins turn the fascia (which should be sort of a gel consistency) hard (more like a cross between styrofoam and stuck-together saran wrap), thus impeding the lymph and electrical impulses (and to a lesser extent the blood) from flowing through. One interesting thought here is that gliotoxin (a toxin made by candida and aspergillus) substitutes for glutathione in the fascia, making it all gummy. But other toxins might affect it as well.
I've managed to address this problem with neural therapy and other bodywork. Lymph massages are supposed to be helpful too. One thing that's also helped is a probiotic called ThreeLac. I hate to sound like an ad, but this seems to have a much better effect than other probiotics. Most probiotics have Lacto bacteria in them, which is inflammatory. This one appears to be anti-inflammatory. Rea suggests that inflammation can be an issue with the fascia, and controlling yeast (which could be part of the goo since it spreads throughout the body) seems only helpful as well.
The toxins flow out much more freely now that my fascia is in better shape. I'd never have gotten anywhere with them if I'd not addressed that component.
RE not having pain throughout much of my illness: I feel sure that for many years during my illness, I was releasing no toxins whatsoever due to my severe methylation block and heavy mold exposure. (The body refuses to release stored toxins when the external toxic exposure is high.....the combination of the two is too stressful and a natural defense mechanism kicks in, I think.) And if there are no toxins that are on their way out, it doesn't particularly matter if the fascia is gummed up in terms of pain. (Electrical impulses and blood circulation is impeded, but those don't create pain.)
I believe that severe headaches in CFS are associated with the stuff I'm now calling the "?" (an outdoor biotoxin that made me really sick last summer in Lake Tahoe). My belief is that if people are getting severe headaches on a daily basis, and especially if they're severely sick in other ways, they might want to consider moving out of the area. Whether the home has mold in it is irrelevant, if that's the case.
Of course, no one has to believe anything I say about any of this....
Best, Lisa
C
Cloud
Guest
Lisa, I've learned a lot from you and always look forward to your perspective. I have made changes based on your input that have helped me to improve. May not be the whole story for me....but a definite piece of the puzzle.
I didn't start out with pain. Then I sprained my back and neck in an MVA (or rather, had them sprained for me; I was passenger in the non-fault car) and they never quite got around to healing properly. Hsp deficiency, perhaps? Been in pain ever since.
I recently got a new diagnosis of myofascial pain sydrome now, so your post about toxins and gummed-up fascia was interesting, Lisa! I wouldn't be ok in the desert, tho. I can't do hot. I wilt.
I recently got a new diagnosis of myofascial pain sydrome now, so your post about toxins and gummed-up fascia was interesting, Lisa! I wouldn't be ok in the desert, tho. I can't do hot. I wilt.
slayadragon
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I'm really glad that addressing mold/biotoxins has helped you to improve, Cloud.
This shouldn't be an all-or-nothing thing. Sometimes it comes across that way, which is unfortunate.
It shouldn't be a choice between either stay forever in a horribly bad environment or go extreme enough that you can climb to the top of Mt. Whitney. There has to be a middle ground, I think.
Probably I should think about putting together some "Tips for Moderate Avoidance."
In your case, I'm of the impression that you moved from a moldy place to a better one. And I'm not of the impression that you're getting those weird "Osler's Web" symptoms, which would mean that your outdoor exposures are not outrageously bad.
The next direction to push would be the "stuff factor," which is hard to overestimate. Most people aren't prepared to get rid of everything, which is unfortunate because (I increasingly believe after doing interviews with mostly or fully recovered CFS patients) it can delay getting well for about five years (which is how long it generally takes for mold toxins to die down).
Getting the bedroom in better shape is a good first step though. Mattresses can't be washed, so they really should be replaced. (Expensive, unfortunately.) And buying new bed linens and a new pillow is really important too.
The "Godforsaken desert" is just a metaphor. I spent much of one summer in Colorado and Wyoming, where (in a lot of places) the air is every bit as good as even the best desert. U.S. deserts are pleasant in the winter -- 50-70 degrees high during the day, substantially cooler at night.
This isn't supposed to be a torture, honest!
Best, Lisa
This shouldn't be an all-or-nothing thing. Sometimes it comes across that way, which is unfortunate.
It shouldn't be a choice between either stay forever in a horribly bad environment or go extreme enough that you can climb to the top of Mt. Whitney. There has to be a middle ground, I think.
Probably I should think about putting together some "Tips for Moderate Avoidance."
In your case, I'm of the impression that you moved from a moldy place to a better one. And I'm not of the impression that you're getting those weird "Osler's Web" symptoms, which would mean that your outdoor exposures are not outrageously bad.
The next direction to push would be the "stuff factor," which is hard to overestimate. Most people aren't prepared to get rid of everything, which is unfortunate because (I increasingly believe after doing interviews with mostly or fully recovered CFS patients) it can delay getting well for about five years (which is how long it generally takes for mold toxins to die down).
Getting the bedroom in better shape is a good first step though. Mattresses can't be washed, so they really should be replaced. (Expensive, unfortunately.) And buying new bed linens and a new pillow is really important too.
The "Godforsaken desert" is just a metaphor. I spent much of one summer in Colorado and Wyoming, where (in a lot of places) the air is every bit as good as even the best desert. U.S. deserts are pleasant in the winter -- 50-70 degrees high during the day, substantially cooler at night.
This isn't supposed to be a torture, honest!
Best, Lisa
Dufresne
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Hi Lancelot. I don't have nerve pain and experienced a gradual onset too. I do suffer from ankylosing spondylitis and it can be painful, but I consider this somewhat tangential to CFS, a minor complication in my case. I've no sleep disturbance either so I guess I fit into Cloud's reference. Paul Cheney claims 5% of us are pain free. Also interesting, if you take a look at Kenny De Meirleir's slideshow in the following link you'll notice on pages six and seven he breaks down symptoms that are associated with both enterococcus and streptococcus overgrowth. Pain and sleep problems are associated with enterococcus, and not with streptococcus.
http://www.slideshare.net/guest4781...s-hydrogen-sulfide-and-aberrant-prion-disease