• Welcome to Phoenix Rising!

    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Moaning today

Judee

Psalm 46:1-3
Messages
4,391
Location
Great Lakes
I'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.
 

overtheedge

Senior Member
Messages
258
Yeah, 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
 

Wishful

Senior Member
Messages
5,632
Location
Alberta
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.
 
Messages
17
I'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.
Thanks, I'm finding it more difficult
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.
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.
 
Messages
17
Yeah, 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
Thank you, I never thought about cold packs before, I'll give it a try
 

Wishful

Senior Member
Messages
5,632
Location
Alberta
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.

What 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.
 
Messages
17
What 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.
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
 

Judee

Psalm 46:1-3
Messages
4,391
Location
Great Lakes
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.
 
Last edited:
Messages
17
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.
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.
 

Judee

Psalm 46:1-3
Messages
4,391
Location
Great Lakes
Oh, 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. :)
 
Last edited:

Wishful

Senior Member
Messages
5,632
Location
Alberta
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

I haven't had a remission for maybe 10 years. I had several in the first months, then a couple in the following years, the latter usually triggered by some treatment. I don't think that rest played a part in any of them. I think the early ones were due to whatever causes ME not being fully locked in, so random fluctuations could switch me out of it. After that, it took more chemical force (drugs, supplements) to switch states. I'm not expecting another remission any time soon. Alas.

My experience is that my ME didn't get much worse after the first few weeks. There have been changes in the symptoms and relative severities over time, and changes in which foods make me feel worse, but I think I'm overall no less active or brainfogged than I was in 2001. Other ME victims report declines and crashes, especially if they overdo activities. Only you can answer the question of whether your condition will deteriorate with time or activity. I wouldn't recommend trying to overdo it, but I wouldn't recommend stressing yourself with fear that decline is inevitable either.
 

overtheedge

Senior Member
Messages
258
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.

Yeah, you know, you might find some real relief from antiinflammatories, be careful though about NSAIDS if you have gut issues as they can harm the gut. Probly best to run any new medications through webmd.com, examine.com or other resources that could spot side effects and interactions, at least that's what I do whenever I start a new med to make sure im not heading into anything bad that might take up time I could be spending trying something that could work long term against this illness.

I know that @Hip has some good info on antiinflammatories in his threads here: https://forums.phoenixrising.me/ind...nxiety-symptoms-with-three-supplements.18369/ and here https://forums.phoenixrising.me/index.php?threads/non-standard-anti-anxiety-treatment.6432/
although that is on using them to fight anxiety you might check it out for places to start looking

I want to say I've read that inflammation can be very metabolically demanding so if the constant pain you have is inflammation related you might end up dealing with less fatigue by fixing the inflammation

Also, there might be specific kinds of doctors for such pain who could get to the bottom of it if other paths fail, if it turns out to be something really complex like a disease process of some sort, might be worth looking into, don't know
 
Messages
17
Oh, 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. :)
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 x
 

Wishful

Senior Member
Messages
5,632
Location
Alberta
Definitely explore other options. It's a complex disorder, and varies greatly with the individual, so you have to try (sometimes very many) different things to find something that works for you. Rest works for someone, and mild exercise works for someone else, and strenuous exercise probably works for someone too.

With medication, you have to test whether it works for you, and you have to retest it occasionally, because your response to the med may change over time. Likewise with foods: some may make you feel better, and some worse, and the responses may change over time. After 17 years, I'm still discovering new things to take or avoid.
 
Messages
17
I think I need to invest some time in finding what will possibly help me rather than just assuming rest and sleep will suffice. Thanks for all the advice
 

Wishful

Senior Member
Messages
5,632
Location
Alberta
I don't suggest spending too much time on researching what works for others, or for what some people hypothesize will work as a treatment for ME. The two things that continue to work reliably for me were accidental discoveries, and no one else has reported having them work for them. The two are T2 (3-5 diiodothyronine, though iodine works just as well, since some is converted to T2) that prevents an otherwise increase in my baseline symptoms, and cumin (curry spice) that blocks my PEM. Both provide their benefit within hours or at least by the next day. The T2 lasts for a consistent 21 days after a dose, and the cumin lasts for 3 days. T2 stops working if I take it daily.

These examples should show how complex finding an effective treatment is. It's not simply 'take some and feel better within minutes'. Some things might take more than a day to start working, or require daily doses for a period. Some things, such as LDN, have a very narrow dosage range: too low and there's no effect, and if too high, it stops working. Some things might require cofactors. As you can see, it's possible to take something that could actually help you, but write it off because you didn't take enough or didn't take an essential cofactor with it. However, it is possible to discover things that can help. You just have to be aware that it is possible, so you can look for it, and keep good records about what you try, so that if you feel better or worse, you can see what you tried in the last few days. Memory just doesn't work well enough for that. I keep a journal of what I eat when (ie. apple 1:30 PM), what I do (dug 6 wheelbarrows soil), and how I feel (abruptly lousier @ 2:42). This not only lets me figure out what makes me feel better, it more often lets me figure out what makes me feel worse. Keeping that journal has been extremely valuable in maintaining as good of a quality of life as I can manage.

Since I haven't had success based on what I researched, I'll wish you pure luck in having accidental discoveries. :)
 

overtheedge

Senior Member
Messages
258
@Kaja
I mean I know you probly have already since this is what everyone thinks of with bad joint aches, but, have you considered arthritis? I know there are several forms of arthritis out there and also that it can come from various things, for instance, just found out I have colitis from a colonoscopty and my dr said if I didn't treat it the colitis could cause arthritis. Probly something to do with the way they are both inflammatory diseases.
Hope all's well
 
Messages
17
Hiya, Yes arthritis was at the forefront of my mind tbh . I think I should see my GP to rule anything else out.