Pain poll

I think the poll has been a great idea @Sly Saint .

I was very surprised that some people have very little pain while some of us have a great deal of it. I am sure that people who have low pain might experience other symptoms that I don't have it have very mildly. Also the discussion that develops is helpful. I think the more we learn about each other,the more tolerant & supportive we can be.

 

I was under the assumption that no pain or sleep issues was considered 'atypical M.E'?

I was diagnosed 26yrs ago as 'atypical' by an M.E doc.

 

As a side note, when I filled out the CCC criteria evaluation form at Stanford (for a study), the "Pain" section was all lumped together. Body pain, joint pain, headaches, etc was all one checkbox.

Since I experience headaches, I checked the box. But I have no pain apart from pressure headaches on one side.

 

Good idea to do a poll like this, but it is hard from this poll to get any sense of the degree of suffering involved.

For example, I normally do not have any pain, except very occasionally some transient lymph node pain in the chest. However, this for me is non consequential, so for all intents and purposes, I consider myself to be without pain as a symptom, as the occasional pains I get do not cause any suffering.

So it would be interesting to know what percentage of patients find their pain to be a significant part of their illness, and causing significant suffering.


In the Canadian Consensus Criteria, pain is one of the 7 boxed criteria that you normally need to satisfy in order to have a ME/CFS diagnosis by the CCC. Although the CCC says that: "there is a small number of patients who have no pain or sleep dysfunction, but no other diagnosis fits except ME/CFS." So in other words, they are saying that most CCC-defined ME/CFS patients have pain, but there are a small percentage of patients who don't.

The CCC describes this pain as muscle or join pain:

The other references to pain in the CCC include: chest pain resembling angina and/or thrombosis, abdominal pain as part of the intestinal symptoms, bladder pain, painful vascular spasm in extremities with cold or hot feelings, pressure-like chest pain over the left chest as part of NMH (neurally mediated hypotension) symptoms.

 

I have ticked a number of the different types pf pain, joints, stabbing, background ache, painful skin lymph nodes, not sure if any else, but the problem is i would generally consider myself to be one of those with M.E who doesn't really have pain in the M.E sense of the word, which means the poll might be skewed.

I always think i don't have significant pain, but then if i take a pain killer for say period pain or a flare of coccydynia then i always feel a little better in myself and wonder if i really do suffer a lot from pain but just tune it out (like the tinnitus most of the time).

I get more pain with PEM, which is joint achey, fluish. I don't seem to get the classic muscle pain of other PWME, and nor have i lost much strength in my muscles - they are surprisingly quite strong for someone who has not exercised at all in 9 years and doesn't walk more than a few meters a few times a day.

If i push myself i do get sudden and overwhelming need to stop and lay down and i get a 'your about to die' feeling, which has pain accompanying it, but this soon stops after resting for say 15 minutes or so.

I also go through periods of painful symptoms that then mysteriously go away and usually never come back. i.e an intense pain in one eye for 5 months, with blurred vsions that cleared up and never came back, a wrist that was painful and weak for one year and then cleared up, joint pains in fingers with swollen lumps for approximately two years, and so on.

 

Hiya, First post
Pain has been a major symptom for me in the 10 years since diagnosis; right up there with Cognitive Issues, Dysautonomia, Immune and of course energy limits.
I have also been diagnosed with FM, but I am increasingly uncertain if I have both ME & Fibro, or just ME.
Have always wondered how others go with pain as i had to reluctantly accept Fentanyl pain patches around 6 years ago simply to bring my pain experience to manageable. Without patches my pain is consistently utterly devastating & disabling - an 8 or 9, and since becoming sick with ME, always has been.I gave birth without any pain relief so think i at least used to have a decent pain threshold.
Have yet to properly understand why we can experience such unremitting significant pain.
Much research claims it’s due to Lactic Acid but other papers say the contribution of Lactic Acid is relatively minimal.
I’m about a 20 on the Bell Scale and suspect I’ve been in Rolling PEM for a Very Long Time. I have only started affectively pacing (using a Heart rate Monitor) since August and suspect I’m just starting to stabilise. Pain has resultingly flared less often, yay!
How do others rank their Pain severity, triggers and duration? For those experiencing severe unremitting pain - does anyone else require regular pain medication?
Can anyone share quality insight into the cause of ME pain? Thx!

 

I checked all apart from skin pain. Pain is one of my more obvious symptoms and is constant in multiple locations (particularly obvious in hip joints). This is a dull ache most of the time ..enough to make you irritable but not desperate and sometimes affects gait . This flares early on the approach to PEM and builds so that it can be eye watering and affect mobility etc. At worst (before pacing) I was in constant flare and Ibubruphen wouldn't touch it, but naproxen did wonders.

I don't take pain killers for it now I'm pacing (I've always had a high pain threshold) since it's useful (if annoying) to give an early warning sign of PEM. I also have constant headache that behaves similarly to the joint pain (flares as sharp stabbing knitting needle through the eye type)

 

Checked all apart from the no pain box! It seems quite a clear divide between those who have some pain...and those who have pain as one of the most major symptoms. For me it has definitely got worse over time and brings me to the brink of losing my mind quite often. The effect it has on your mental health is huge and it is easily as hard to manage as PEM. I did not have pain like it when I first had ME in my 20's so was unprepared for this!
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WElcome @ConstantlyEvolving - you have my sympathy as that level of pain is SO difficult. I also think I may have fibro, but am not diagnosed and do not have enough of the tender spots to get that diagnosis. I think of it not as about pain thresholds (which implies a lack of stamina on the part of the patient), but that the same neurological disfunction that gives me PEM, Dysautonomia etc....is also making my nerves send more pain messages to the brain and the wiring in the brain is hearing it much more audibly than it would if I was 'normal'

 

Thanks Trish - I’ve been quietly lurking for a few weeks and am very glad to have come across this forum, which I’m slowly exploring.

I’ll contribute more when I come out of my current crash., and yup, it helps - solidarity helps, shared experience helps, and knowledge helps.
Heaven knows we deserve all the help we can get and if my brain wasn’t a pool of custard on the floor I could better discuss what i used to understand about Caboxylic and Lactic Acids, Glycolysis, our poor overworked kidneys, problems with pH balance and accumulated toxins that contribute to our nasty pain levels.

I get the weeping - I surely do. Thanks for your reply and welcome

 

I agree - our over stimulated ‘stuck on full throttle’ ANS is amplifying and rebounding those pain messages, and every other neuro message, far more than if we were still in homeostasis. It’s my goal to calm the Sympathetic NS and allow the Parasympathetic some room to glow, so to speak; and so I’m doing some functional neurology with my trusted highly skilled, super smart and all round good-guy chiro - the plan, if I can get out of bed, is to slowly but surely retrain my brain.

It took many years to come this severe. I hope it doesn’t take as many to reverse it. Thx for your post.

 

I checked "no pain." Not entirely true, as in the early period of the disease I had pain in lymph nodes on the side of my neck and under my chin. That pain disappeared but has re-emerged a few times, to disappear again.

I generally feel a sense of pressure behind my eyes and generally feel brain-fogged (to greater or lesser degrees) which feels like a very dull headache (which isn't pleasant, but not especially painful).

I've ever never had muscle or joint pain or other sharp pains that I associate with this illness.

Bill

 

My daughter has joint and muscle pain and persistent lymph node tenderness and swelling- she describes her joints as feeling as though there is too much air between the bones, and has particular issues with wrists, hips, jaw and knees.

There is hypermobility, but she has described a new feeling - can anyone else relate to this - it feels as though there are termites between her joints?

 

I have a constant all over ache/muscle burning like the flu. This gets worse with PEM, and activity. I also have migratory joint pain. And, sharp pains on top of my head when I've over-exerted. I also have lymph node pain. My hands go numb if I don't sleep with them pointing downwards; this numbness/tingling is painful.