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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Thanks, I'm finding it more difficultI'm sorry you're going through this @Kaja.
I have some pain issues (scale of 2-5) but they are not my main issues but when it gets to a 4 or higher the pain can really be the pits especially that achy all over experience.
Do you have anything that can at least turn it down a bit? Sometimes just doing that makes everything a tiny bit easier to deal with.
I think I underestimate just how much of an effect M.E has one until I have a bad day just so used to the exhaustion and pain now I don't remember ever feeling anything else.Yup, I have days when I just want to hide under a blankie. Yesterday I found out that I'd forgotten to take my PEM-blocker the day before, so I felt achey and lethargic. In a way it's good to remind myself just how lousy PEM feels, so I can properly appreciate not feeling it.
It's possible that there's something in your diet or activities that triggers the pain. Keeping a detailed food/activity/symptoms journal can help identify the trigger.
Thank you, I never thought about cold packs before, I'll give it a tryYeah, you're definitely not alone in that
Always end up with joint and spine pain as well as general back pain that seems to cycle from one place to another, lying in bed all day n all. Went to a chiropractor the other day n he used cold packs and a TENS machine and the relief was very noticeable, I'd been in pain for weeks and having difficulty sleeping or even lying down from the spine pain, though, some of that pain relief may have been from his adjustments. Pain has lessened overall for sure and has stopped being much of a problem for this past week or so since the most recent treatment.
TENS machines do a great job of killing pain, Ive used them with good results though never thought of using one across my spine like the chiro did, I use one now and then for upper back pain, got one for my dad and he got such relief from it that he bought one for a friend. Don't know if it contributes to healing of the pain areas though, might just kill the pain, so, if you use one be careful not to be hard on those areas just because they're pain free as it might make the pain worse in the long run, I should note I've never used a TENS unit repeatedly day after day, just in several day bursts, so I cant say how good they are used long term, but the relief is usually quick and lasts for a good bit.
Cold packs are good for inflammation from what I've read though,the temperature seems to take away energy from the body so It's been a tradeoff for me based on what is needed most at the time.
All the best
I think I underestimate just how much of an effect M.E has one until I have a bad day just so used to the exhaustion and pain now I don't remember ever feeling anything else.
I don't remember the last time I had any kind of remission, I expect it's because I don't rest enough or slow down. Do you have good days very often? I'm scared I'm getting worseWhat really shows how bad we normally feel is when you have a brief remission of symptoms, which can happen sometimes. You feel bursting with energy, and want to run and jump around, even though that's probably just a return to the normal levels of energy healthy people feel. It's shocking what a burden we're carrying around with ME.
Do you think it does get worse? I'm scared for the future, I finally have the job I worked and studied so hard for and I'm worried M.E will take that from me. I'm having more and more bad days , or maybe I'm just noticing them more. I'm weary about trying anything new due to existing medication.I remember my last remission when I had about 16 hours of energy but that was years ago and I can't even remember a time before that. It does get harder when it's been so many years without one.
I think we just learn to push through the fatigue and pain to get survival life events like eating and such done, but I will say pain does make things much harder and if you have something that you absolutely must take care of on a pain day, it can be very hard.
The only comfort for those days is to give yourself permission to moan and maybe try to think of a way to move responsibilities around in a way to be able to take a day off but as I said, that isn't always possible.
Edit: Plus, as I said earlier, if you can find something to take the pain level down a bit, that helps too. My mom uses a combo of something called End Pain and a COX2 supplement. She only takes a 1/4 to 1/3 of each pill. It's difficult to make the recommendation to you though because we pwme/cfs tend to react to a lot of things and both these formulas have 2-4 different herbs in them.
You could also try a malic acid/magnesium formula if your pain is caused by fibromyalgia. I've seen some good reviews on that and sent some to my sister. She's pretty busy though and hasn't given me any feedback on whether it is working for her. It's suppose to help with energy too but for me the malic acid just makes me feel wired and nervy.
I don't remember the last time I had any kind of remission, I expect it's because I don't rest enough or slow down. Do you have good days very often? I'm scared I'm getting worse
Edit: Plus, as I said earlier, if you can find something to take the pain level down a bit, that helps too. My mom uses a combo of something called End Pain and a COX2 supplement. She only takes a 1/4 to 1/3 of each pill. It's difficult to make the recommendation to you though because we pwme/cfs tend to react to a lot of things and both these formulas have 2-4 different herbs in them.
Hi, I never think about looking Into anything else ie rest therpay, I've tended to keep everything black and white, I take meds and rest when I can , I should explore other options . Thanks for your help xOh, I didn't mean to discourage you.
If you are still able to work, that tells me you may still have some in reserve. That's a good thing. It might just be a matter of pacing and making sure you rest religiously whenever you can and doing things in more planned out, less tiring ways.
There are some really good posts about aggressive rest therapy you could look for here on PR. The people doing that say they've managed to heal and to get some additional strength back.
Plus, I think we are very close to a breakthrough with this disease so don't lose heart.
I agree that if you have medication you're on, it's best not to mix things.
On the flip side, you might see if achiness is a side effect of that medication and talk to your doctor. There may be something else that would work equally well without the additional pain flair ups happening.
Edit: My mom suggests talking to a pharmacist because many times they know more about medications than the doctors do.