Pain

PNR2008

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The pain I get with CFS/ME distinct to this condition for me and that is a burning close under the skin in my thighs and arms sometimes radiating down to the calves and feet or up to the shoulders. I always imagine a semi truck parked on my body weighing it down into the bed. Then it aches like a toothache that sometimes gets better with vicodin and sometimes not. I suffer terribly with this pain as it plays with my mind like I'm going to lose it if I don't get relief. The FM pain is a burning/stinging pain for instance my sister playfully punched me in the arm right square in a trigger point and I felt like dying. The pain felt like she stuck a screwdriver in my arm and it lasted for hours.
 

valentinelynx

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Can be anywhere, but the constant pain I have is in my hands and feet, continuous burning-type pain. My muscles stiffen very easily and if I let that set in can become quite painful, particularly where they attach to major joints, so I stretch and for the most effective preventative, get a Thai massage every 2 weeks. Periodically I have had terrible "pressure" type headaches that weren't amenable to medication. Thankfully haven't had one of those in years.
 

ukxmrv

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With "just" the ME part I get pain in my muscles when I do a small amount of exercise. This is severe and can take days to build up and then days to go (if I am lucky).

At different times (not related to exercise) I get a neuropathic type pain that feels as if all my inner bones are on fire and in a sharp, intense, stinging sort of way.

When my viral symptoms are bad I get an all over fluey ache plus sore throats, sore glands in different parts of my body etc

Lots of different types of pain.
 
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It's just that I've supposedly had CFS for a few years, but never experienced pain - which I thought was a typical sumptom......causing me to go further into denial.
But over the last few weeks I've been experiencing pain in my legs and didn't know whether they were CFS-related or something else.
So just doing a bit of research.
Thanks for your help.
 

heapsreal

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I tend to get muscle knots around my shoulder blades and impossible to find a stretch that hits them. my neck gets stiff alot too. Someone mentioned a burning pain under the skin sort of prickly feeling, i get this alot across the top of my shoulders alot as well as generally all over my back.

cheers!!!
 
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My pain first developed in my neck and back 9 years ago. I had a cervical disectomy with fusion in 2005 that launched my undiagnosed ME CFS into orbit. It is a gnawing & total body pain that radiates out from my spine. I would like to hear from anyone who's first "REAL" symptom was pain as was my case. I went off all pain meds last years and surviving each and every day is very difficult. My muscles feeel locked up.

I could almost handle all the other symptoms but pain. Weather is involved. If the barometer moves up or down I feel it. If I over tax myself mentally, emotionally or physically my pain increases. Viral load increases pain, so does the wind.
 

Sushi

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It's just that I've supposedly had CFS for a few years, but never experienced pain - which I thought was a typical sumptom......causing me to go further into denial.
But over the last few weeks I've been experiencing pain in my legs and didn't know whether they were CFS-related or something else.
So just doing a bit of research.
Thanks for your help.
LDN helps many with pain--not sure what types respond best except fibro pain is know to be helped. It is inexpensive and might be worth a try, though you have to know the protocol well (I wouldn't use a doctor's instructions without checking it myself). www.lowdosenaltrexone.org.

Sushi
 
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everywhere...back of head/neck shoulders burns alot...stabbing, throbs, burns....not to mention pain from the headaches and migranes...in eyes..head..face...mental and emtional pain...looks like something would be out there to help us
 

ukxmrv

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Ozikiwi,

What happens when you exercise?

As you probably know you don't have to get pain to get diagnosed with CFS. There are so many different diagnostic criteria it may be that one was used that was based on fatigue instead. This causes a huge range of functioning and symptoms between patients diagnosed using the term CFS but being in some cases different patient populations.

I'd have a healthy skepicism of a CFS diagnosis unless it was done by an expert doctor, with a lot of tests and many other things ruled out first.
 

*GG*

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It's just that I've supposedly had CFS for a few years, but never experienced pain - which I thought was a typical sumptom......causing me to go further into denial.

But over the last few weeks I've been experiencing pain in my legs and didn't know whether they were CFS-related or something else.
So just doing a bit of research.
Thanks for your help.
there is a women in my support group that has CFS without pain. I actually also have a diagnosis of Fibromyalgia, so pain is "expected" with that diagnosis.

GG
 

valentinelynx

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It's just that I've supposedly had CFS for a few years, but never experienced pain - which I thought was a typical sumptom......causing me to go further into denial.
But over the last few weeks I've been experiencing pain in my legs and didn't know whether they were CFS-related or something else.
So just doing a bit of research.
Thanks for your help.
I had no pain for the first 2 years of my illness. Not that I called such anyway. One of my early symptoms was stiffness in my hands that had no explanation I could think of. When I woke up my fingers would hardly bend at all, and would gradually loosen as the day went on. (Of course there were other symptoms, but I denied them all for years). After 2 years, I started to get twitching and aching in my legs and arms, and a patch on my left forearm with tingling burning pain. As years passed (started in 1993) the pain had become a more and more salient part of my condition, with the now continuous burning hand and foot pain and intermittent pains elsewhere. Sometimes I hurt all over like the flu, sometimes there's a deep ache in my large muscles, sometimes I have headaches. But there is always some kind of pain. Nonetheless, I've always said I can deal with the pain (medications help) but the feeling of being crushed by a terrible weight is what is crippling. That feeling like my limbs are made of lead and my brain is mired in molasses. That is what is keeping me from living the life I want. Compared to many with this illness I am lucky, I know, as I have only been bed bound for short periods.
 

taniaaust1

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With this illness I have gotten pain everywhere possible...

within the bones (that was like inside of bones being drilled in)
all over skin pain eg sheets on bed hurt you
skin being bitten like pain
pain radiating from behind the eyes into the eye balls
headache pains
IBS bowel pains
increased period pains
chest/heart like pains
FM pains (wandering pains, muscle pains, trigger point pains)
sole of feet pain (from walking)
..

Having this illness has certainly taught me about different kinds of pains.
 

Gavman

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ozikiwi, seems like different people have different thresholds with pain, i myself have an irritatingly stupid ignorance of pain. which can be fun too. I have recently been having work done on The Governing Vessel meridian point and it has improved my tendency to be aware of pain. Plenty of reasons why people feel that way, especially with tight muscles slowing the circulation of blood through your system.