As pain is currently optional on the NICE guidelines I was just wondering what sort of percentages experience pain as an ongoing symptom. The pain should be only attributable (as far as is possible to know) to ME, ie not another existing medical condition. Where it might get tricky is if you only get pain as part of PEM (?) You can tick more than one box, but obviously not if you tick the no pain box.
From my experience pain & ME is a complex thing. I get all the types of pain listed but not all of the time .....apart from the general background type and the random pain. The others listed are PEM related for me apart from the skin pain. However, in my personal experience, ME fluctuates regardless of pacing. So if I am at a poor phase in the fluctuation the background aches will be worse and the PEM ones will be more severe with comparative effort and they will trigger more quickly. This is when my skin becomes very sensitive to touch. Complicated by the fact that if I fail to pace myself I can actually trigger a more severe phase of flare up. This can also be triggered if I catch even very minor colds etc. There is also another type of pain for me - general areas of skin that burn or sting for no good reason. The skin looks perfectly normal & there is no sign of irritation. Mind you, sometimes the patches are numb, so an absence of pain. It's a very complex thing.
I don't have pain, but I do experience deep achiness/sore muscles and sometimes joints. At times I would describe it as borderline pain but don't take meds for it. It's not related to PEM.
@Sly Saint, can you add an option for intermittent pain (of any kind)? I'm lucky enough to not get pain generally, but do get eg, muscle aches and pain due to sensory input etc depending on level of PEM.
I get the Fibromyalgia pain complex that was early on generally associated as part of CFS i.e. CFS-FM. I realize they are 2 independent illnesses but I thought most PWCs had pain issues due to inflammation around the spinal column and around the pleural cavity, the ME part. The above ‘no pain’ reports are a surprise.
I get a burning muscle pain, but only when I am physically moving. For example; drying off after a shower, walking up stairs, combing my hair, sorting paperwork, etc. However, once I stop what I am doing, the pain goes away within a few seconds.
My ME/CFS diagnosis was delayed for years because the disease criteria my HMO used required pain, which I don't have (just episodic headaches). The IOM criteria don't require pain, and that's when I finally got diagnosed (2015).
Actually @Vertical, that reminds me, I do get quite a lot of chest pain even with cardiac medication. So used to it that I forgot about it It also ebbs and flows.
Of course there's also the intermittent sharp, stabbing eye pain and stabbing ear pain too....(both been checked).
I would have answered not much pain at all, however, what i notice is that for years now i live on my heating pad. Every day if i get out and about for errands, i will get PEM and pain along my spine which is also sore if I press with the fingers. The heating pad relieves that pain for the most part. I also get ‘brain cramps’ if I use my brain too much, such as if i am engaging in conversation, or if I venture in cognitive labor. All in all i am not answering this poll as the answers are too simplistic for what i experience.
I've learnt to live with the pain, which is much less than it was but have begun to experience the sensation of cold, as if cold water were running down my outer thigh. Its only a small area and is short lived and only on one side. Ironically in one place that doesn't hurt. Any ideas? Got short shrift from the doc when asking about pain especially in hands and feet, hands also sensitive to knocks. I feel old
This would prompt me into getting tested for small fiber neuropathy which has recently made the news as 40% of a fibromyalgia cohort meet the criteria for small fiber neuropathy.
My daughter ticks all the boxes. Recently she has described her joints as being " cold on the inside" and having " too much air inbetween". She is still growing - achey knees have always been a sign of growth spurts. Having had chickenpox, shingles and glandular fever and what seems like a constant reactivation ( flu , achey and swollen glands), it may be something to do with how reactivation kicks in / ramps up. ( A chemistry lecturer told me that EBV hides in joints/ nerve ends) Headaches are worse with low pressure. Migraines have been issues in the past - stress and hormonal. It is horrible when you can do nothing for your child.
To be honest at times I think it's easier to have it myself than it would be to see my child go through it. Sometimes I find myself just trying so hard to simply exist that I don't have the additional resource to think too hard about it. Harder again to have it and have to watch your child suffer too. to all the parents fighting for their kids.
I ticked muscle pain. I have a mild stiffness and soreness across the back of my shoulders and upper back. I attributed it to working as a computer programmer and spending long days sitting in front of a computer. I assumed it would go away once I lost my job. It did not. It is never severe enough that I need to take pain meds.
I looked into referred pain ( picture was on british arthritis website) and the area on back where pain was sorest for my daughter corresponded to stomach. Subsequently found H Pylori - may or may not have been coincidental . Chiropractor found slightly tilted and rotated pelvis which was throwing shoulders off line, and adjustments have helped with pain however muscle strain/ pain and genetal uncomfortable ness still an issue
I thought PEM might cause a few probs on this issue (see my first post); as @Invisible Woman said, I realise it can be complicated. Maybe another poll on what is experienced as part of PEM(?) The problem here is what one person considers nerve pain may be different to someone else......eg that's why I put the 'Unexplained sharp random pains' which might also include the I know the poll answers are generalised but it would be impossible to cover every combination/eventuality...............it's not meant to be a test!
