What to do about chronic pain

[Drummer76]

Recently went to a pain dr again. Was diagnosed in 2006 with FM. I done physical therapy for the 20th time it seems but this time,the therapist I had said there has been zero change and that pt will not help me.It was hard doing pt,I was able to go 2x a week and laid up 2 days after each session.
I’ve been in horrible pain for the past 2 months.
I have a huge intolerance to the medications used to treat fm and I have tried them all. Always ends in hugging the toilet.
I’ve changed my diet since I had a heart attack in 2020 and made other changes. Seemed to help for a little while but now nothing seems to work. I pretty much have zero quality of life. I don’t leave the house unless it’s to go to the dr,which only 2 of them I have to go in,the others are tele health.

When I seen the pain dr,I did ask for a pain medication so I could get up and moving again and try to get through this,I’ve been against the use of opioids to treat my pain and have just dealt with it until now. And even now,it would have been temporary to use them. I’m not a fan of them. My request was denied and I was told they can’t prescribe them for fibromyalgia. Ok so she tells me I need to move around more,moving around more causes more pain and more days laid up in bed. I’ve stopped playing drums,which used to be an everyday thing for me. 2.5 years ago I was playing 1-2 hours a day,it slowly went down to a few songs a day to now nothing at all. I have a pretty large drum kit,9 piece which takes up half of my room. Very good exercise and has kept me going with moving around and with a good cardio workout.
What more can I do to help with the pain so I can try to get back to my normal life that I used to have? It’s getting extremely frustrating and the depression and anxiety have been much worse the past few months and I went back on an antidepressant because of it. I feel like if things don’t change soon,I’ll be back in the hospital with another heart attack from not getting in my daily exercise. I feel like I’m in a no win situation.

 

[sunkacola]

@Drummer76 , You have a tough situation, no doubt about that. And I fully understand your deep reluctance to use pain medication, especially opiates, because I have the very same thing. I go through a lot of pain because the opiate medications are bad to use daily and so far nothing else works, or it works on the pain but gives me side effects I cannot endure one way or another.

Have you read my advice post pinned at the top of the General forum? If not, give it a read to see if anything there might be useful to you.

Continuing to experiment with your diet seems like a reasonable thing for you to do, because you never know what might turn out to help. You could try taking some supplements, perhaps.

As far as exercise, can you experiment with that too, (if you have not already), break it down into even smaller pieces? A walk around the block or just to the mailbox or halfway down the street? Can you just do maybe 30 seconds of drumming, and make it something very light, not much effort required? If you can break it down into tiny pieces you do more than once a day there might still be the chance you could build up to more. And it would always be better than nothing.

As for getting back to the normal life you used to have...............this is what we all dream of. And I do not believe it is truly impossible for everyone with fibro, but it's definitely a long shot. I personally do not expect or hope for that, and it might not be the healthiest thing to go around hoping for that. I am sorry to have to say that. And remember, I don't know everything by a long shot and no one can predict what you might be able to accomplish.

I do know that feeling frustrated, which is a variation on anger, is very unhealthy and will cause or exacerbate problems. I went through it big time, myself. What I learned is that the energy I spend being frustrated or angry or upset that I can't do what I used to do is a huge energy drain on me, and takes away energy I actually do have that I could have used to do something, even if not what I really want to do. I found that the more I could adapt and accept my reality as being what is in this moment, the more peace of mind I had and that definitely helped to lower the pain level. Didn't remove the pain. But helped. And it turned things from being no-win to being at least acceptable on a daily basis.

I used to be super active, outdoorsy, I worked out every day with weights and used to hike a lot up and down mountains and it was my thing. My favorite thing to do any time, any where. Now, I cannot go up and down mountains any more, and I am on a mission these days to find activities I can do regularly that are enjoyable and possible for me and that won't make my pain worse. This takes time. And it has been heartbreaking for me to lose my #1 favorite activity. Acceptance is required. Patience is required. It's hard. But as I see it, there's really no choice, because as you say, no activity at all is even worse.

I wish you the best and hope that at the least you can feel supported here.

 

[Drummer76]

I haven’t read it but will. I have tried some lighter drumming and it was still to much on me. I never really beat on the drums like most drummers did and always took it easy because of my condition. What I meant about normal is my normal where I was a few months ago atleast or a little better. I know I’ll never be normal again,knew that a long time ago.
Walking more then a half a block is to much on my back. I used to go walk around a lake everyday and last year was the last time I was able to do that and it caused a great deal of pain doing that. I had to stop and rest 3-4 times and it’s about 1/2 mile walk.
Right now I’m willing to try anything to get back behind the drums,even if it’s just 15 minutes a day I’d be happy. I’ve been playing since 2008 and it’s disappointing looking at them knowing what I used to be able to do and what I can’t do now.
I appreciate your words of encouragement,and advice.

 

[sunkacola]

@Drummer76 , If more than a half block is too much, then walk less than that. Do what you can do without causing yourself more pain, but do it every day. If there's a day you seriously can't, OK. But then do it the next day for sure. You have to do whatever you can, no matter how small it is.

Try lighter drumming, but only for literally 30 seconds. That's it for one day. Same thing next day. If three days of this doesn't cause you too much pain, then go 1 minute. And so on. You might be able to work up to 15 minutes.

The thing is that when you've been an active person, it seems ridiculous to stop after 30 seconds, to walk around the living room and then stop. but you have to start somewhere, and if you do more than your body can handle and cause pain then it's not worthwhile. Of course, it's important to distinguish between pain and just the positive strain or ache that exercising properly can cause, but I assume you are fully aware of that difference.

I am a dog trainer. Dogs have taught me more than anything else in my life has. One thing I have learned is that if I don't break something down into teeny tiny steps when training a new behavior, I am not giving the dog the best chance to learn, and it will take longer or not work at all. Sometimes those steps have to be so small it may seem ridiculous, but my experience has shown me over and over that learning is fastest and least painful the smaller the steps and the more reward given for each right move.

The same thing applies to human beings, whether learning something new or trying to get back into better condition, changing a habit or way of thinking, or anything else.

Believe you can do it, and go about it methodically and slowly and you might be surprised what you can do.

 

[Drummer76]

I’ve been trying to walk from like the bedroom to the kitchen 3-4 times or until I start feeling my back hurting. It’s a pretty sharp pain so I know when I have overdone it.

I know I have to get back up and moving somehow more then I am now,it’s never good with fm to sit wall and do nothing,that’s a step in the wrong direction.
I’m not even sure how I ended up in this situation for the past 2 months. I was doing as good as I could with things but these past few months have been hard. Now with the weather changing in a few months,it’s going to start all over again.

 

[johnsalmon]

,I’ve been against the use of opioids to treat my pain and have just dealt with it until now.

good - opioids are not effective for fibromyalgia they make no difference to the pain

 

[sunkacola]

good - opioids are not effective for fibromyalgia they make no difference to the pain

Just want to clarify this a bit. It's not true that opiates make no difference for people with fibro. Actually, no statement that says anything always works or never works for people with fibro is going to be untrue, because each person is so different. That is why there is no effective treatment for fibromyalgia on the market..... nothing works for everyone, and equally nothing fails to work for everyone.

For some, it doesn't work, just like everything else. But for others opiates like tramadol are very effective for the pain. The problem is that with a drug like that, it is inevitable that a body will get used to one level and then it won't work any more and it will be necessary to take more, and because it is an opiate it is highly addictive. It's amazing how little, and for what a short time it takes for a body to become dependent on it and opiate addiction is no joke.

This is why I always try to steer people away from even thinking about taking opiate medication unless it is very strictly used, only very rarely, and only when absolutely necessary. I, for instance, will take a tramadol perhaps 5 or 6 times a year, and only on the days when I am lying on the couch unable to think because the pain is so bad, and it's my third day like that. It's very effective for me under these circumstances, taking the pain down to a manageable level. But I would never take it 2 days in a row or more than once a month, tops.

 

[Gingery]

Hi Drummer76,

I recently have had significant relief from working with the app called Curable, which retrains your brain to tone down pain signals and stop reacting to old trauma. I also have had terrible fatigue this year , whereas it has only been pain in the past, and qigong is about the only movement I can do some days, and it does really help get the joints warmed up and the circulation going. I’m also finding pain relief with Pregabalin and California Poppy. And liquid b vitamins and complete gummy vitamins during the day help with energy.

I hope some of these ideas are new to you for you to try. Let us know how it’s going.

 

[JayCS]

Sorry, so much I can relate to here that this has got really long...
Starts with short lines and ends in 1-2 "essays".... Hope something in it helps someone.

I done physical therapy for the 20th time it seems but this time,the therapist I had said there has been zero change and that pt will not help me.It was hard doing pt,I was able to go 2x a week and laid up 2 days after each session.

Dead right to stop, good on the PT saying that. Normal PT doesn't help and is often much too much, it's overdoing it. Instead it's my experience that it's much better to try gentle good manual therapists and youtube exercises for your specific local pains.

I’ve been in horrible pain for the past 2 months.

No wonder if you've been doing PT 2x/w! That alone might be reason enough. Even if there was a time where you were able to manage that. But 20x with 2x/w sounds like 10 weeks which'd roughly be the those 2 months?

I have a huge intolerance to the medications used to treat fm and I have tried them all.

I haven't cos the 6 I tried were bad enough...

Always ends in hugging the toilet.

Never had that from meds, and not much riding it either, but blotches all over, seizures etc.

I pretty much have zero quality of life.

I get mine high from practicing radical acceptance / mindfulness (like ACT), pretty independently of my physical state (which brings me to pretty much zero normality).

I don’t leave the house unless it’s to go to the dr,which only 2 of them I have to go in,the others are

Yep, my main shops are 5' away, not easy. docs 5-10', not much more, can't leave the town, hardly the house, so I get that. For me it's the exhaustion, not the accompanying severe Ache, which I could override if it didn't make me ill.

When I seen the pain dr, I did ask for a pain medication so I could get up and moving again and try to get through this,I’ve been against the use of opioids to treat my pain and have just dealt with it until now. And even now,it would have been temporary to use them. I’m not a fan of them. My request was denied and I was told they can’t prescribe them for fibromyalgia.

Like sunkacola, to me it doesn't sound like meds will get you "thru this". They'd suppress the pain a bit, you'd do more instead of adapting, and it'd get worse.

Ok so she tells me I need to move around more, moving around more causes more pain and more days laid up in bed.

It'll be the amount and intensity. Aim, like sunkacola says, is to only move so much that it doesn't cause pain and never brings you into bed. Getting everything to calm down.

I'd also recommend what sleep experts say never to go into bed unless you're sleeping, no matter what, so finding an alternative outside the bedroom to rest in a position - that is comfy but allows flexible movements.

I’ve stopped playing drums, which used to be an everyday thing for me. 2.5 years ago I was playing 1-2 hours a day, it slowly went down to a few songs a day to now nothing at all. I have a pretty large drum kit,9 piece which takes up half of my room. Very good exercise and has kept me going with moving around and with a good cardio workout.

Ah, that explains your "name", I've always wondered.
I've had to stop making music too, completely, costs me too much energy. From producing tracks down to 'quick ones' down to still playing easy stuff with others - piano or cajon - down to: nothing, only arranging simple pieces when asked for. Dug out old & new listening favourites instead, identifying much loved but mysterious songs on old cassettes. And put the instruments and mic away for the time being. My workplace now has my supps and "instruments" like massager on it, to focus on them more, make it easier to find, prepare and use them. (Doesn't mean that's my life or that now defines me / my identity in any way, if I didn't have it there it'd be more strenuous and I'd forget, which would drag my quality of life down.)
Also less in the way. No yearning, no pining. Nothing that bogs me down and keeps a hold on me. Free to still savour listening to what I was once able to produce. But am free and able to look for new things to discover and cherish, which enrich my life as it is now. The same way as I've had to learn not to define myself by how I perform in life, the same way what I do does not define me, anything I do is only a part of me, which I have not lost, it's still in me, but there's so much more, too. I'll never be too old to start life anew.
One day I may be able to re-discover it all, maybe in a different way. But I won't get there by being bogged down by what is impossible at the moment, I'll get there by doing what is good for the whole of me, what my need is.
A big problem also is if I did a little when I can, I'd always get carried away with enthusiasm. Table tennis involves me mentally less, so it's less risky to pace, plus when I want another game on not so good days, my mate sternly asks "Are you sure?"
But still that's getting less too. Occasional good days with 6 games, but on many not possible at all. And this is my only sports of many that's left, and only possible cos I don't move or talk - but laugh!

What more can I do to help with the pain so I can try to get back to my normal life that I used to have?

There are actually 100s of treatments to trial to help with pain. I've tried many 100s, I do >100 all the time directly and indirectly for pain, but I know there's a lot more, esp. for local pains, maybe not as yet for the overall "Ache" from overdoing it. As soon as you/someone says exactly what kind of pain, my ideas what to try and where to look overflow... The problem is it's not easy. - It takes time, effort, and can harm, esp. if not done low and slow.

I do think there are situations where people can use their high motivation to get back to some point they used to be or any other aim. But the hardship in this case may be - as said - that what we have to do to get forward is to let go of wanting to get it back like it was. Another route in my case - for work and play - was making self-care a full-time job. That worked and did get me back to work a bit (to a job that I'd worked hard at making a dream job). But it actually wouldn't've been enough in the long run, everyone had to "cheat" quite a bit for a year, by making it easier for me. And then the jabs finished me off. Now I can only / still do a bit online for another year - luckily my favourite bits actually, and in the meantime I've found much too much other "jobs" (garden & volunteer type), always have too much to do, sometimes I'd just like to do "nothing". But that's the constant up to now, that I "can't" do nothing. But there may come a time, where I can do just nothing. And I'll still try to enjoy life, even if I can only see one colour or hear one note.

 

[Badger]

Hi @Drummer76, I'm sorry to hear about the struggle you have been going through, hopefully you can make some progress over time and play the drums a little. I had to stop playing the drums about 20 years ago. A self taught player, it was towards the end I began to focus on rudiments with the Moller method and grooves / time signatures. Like yourself I tried to play with a relaxed approach but unfortunately it became more difficult with pain and fatigue.

I greatly miss it and am grateful for having had the chance to play and meet a bass player I clicked with. We're still drinking buddies. Keep your chin up, it's good to meet a fellow drummer who understands what it's like. It sounds like you have an interesting setup, I had a 4 piece but a 9 piece would be great fun to play with

 

[Nan]

Hi I’m reading the letters and opioids seem to come up often. Can I ask what people do take? I have spinal problems and also Oesteoarthritis so never really know what does cause my pain. Hope everyone has a better day today. Nan

 

[Barbella]

I've read the letters also. So much to say but will try to keep it brief. Opioids are addictive and should be in the bin. They DO NOT work and cloud your mind taking you into a place of deep mental despair. Doctors tend to look at FM patients as if we are hypochondriacs. Every one of us has a different story but bottom line...we all live in 'chronic pain' on one level or another and its...real!
Some have a higher threshold of pain than others. I have chronic pain which is intensifying more each day. I cant walk if I sit for more than 5 mins and cant stand and talk to someone for very long without bending over in pain. After 3 hours sleep, the pain begins and every night at 4 am, I begin rolling around in pain until dawn. So sleep depraved but have to move as its the only way.
No pill on the planet has been able to take this pain away and I can barely remember what a normal night sleeps was like. Never in bed before 1am and when I turn down the covers...I call it 'my torture chamber'. Broke off my engagement because I cant sleep with myself let alone anyone else.
I was diagnosed with SLE in 1990, Osteoporosis in 2012 and FM in 2015. After a farm accident, I had a traumatic reconstruction and hip replacement in 2019 then had my other hip replaced in March 23 after wearing it down bone on bone. I broke my ankle in 2021 and had 2 ops for that, then spinal surgery in Oct 23, which made no difference to my back pain ...and since all these surgeries, my FM has gone through the roof with increasing intensity and indescribable pain all day and all night long.
The only thing I can recommend is to always remain 'positive' and accept life as it is as there is alot worse off people out there trying to survive each day. Keep busy doing the things you like to do and walk as much as you can. The worst thing that can happen is to jump on the merry-go-round of BS with doctors writing referrals and getting you hooked on pill popping. Most don't understand FM so will prescribe just about anything, with little or no affect....and as a result...you then fall into a deep depression because you're still in pain so, the final resort is prescribing you anti depressants. If you get to that stage, you now have a mental health problem on top of your FM.
After I tried every doctor, potion, therapy and pill...with no resolve...I began my spiritual walk to seperate myself from my body full of chronic pain, which has pulled me out of the dark and made it possible for me to smile each day filled with hope. This has been the only thing that has diminished the pain signals in my brain. This is my journey dealing with chronic pain but now I look at it differently and cope so much better than before. Very powerful stuff and changed my life. FM does not have to 'rule your life...you can rule it'!.
Apart from taking a few Panadol's before bed, my inner strength gets me through each day and Im happy to help anyone who would like to try the same approach. I would'nt be here otherwise!

 

[sunkacola]

Opioids are addictive and should be in the bin. They DO NOT work and cloud your mind taking you into a place of deep mental despair.

hello @Barbella ,

thank you for your inspiring and beautiful post, and welcome to the forum!
Just one thing I need to point out......

The above from your post is only partially correct. Opioids do help some people who have fibromyalgia, so to say categorically that they do not work is inaccurate. It depends on the individual.
The opiate medication tramadol is helpful to me, and I use it ( only very rarely) for certain kinds of pain. there are members here who take it regularly because it helps them.
Opiate medication is not something I ever recommend because, as you say correctly, it is addictive. For very occasional use, if it helps, it's OK. But to take it every day definitely runs the risk of addiction.

As for clouding the brain or making a person descend into despair, again, this is an individual thing. Opioids have never had that effect on me. But extreme caution needs to be used if a person is going to take any opiate medication.

No pill on the planet has been able to take this pain away

This is very often the case for us with fibromyalgia.
There are, however, some things that an individual can do to make things better, and I wrote a post about that if you care to read it.
From what you say, you already have a very good grasp of how to manage this in your life, but who knows, maybe there's something there that might be useful to you.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

This is my journey dealing with chronic pain but now I look at it differently and cope so much better than before. Very powerful stuff and changed my life. FM does not have to 'rule your life...you can rule it'!.

Good for you! This is what I hope for, for all of the members on this forum. Thank you, and I hope you will find this forum useful to you.

 

[Badger]

I've been wondering what it would be like on the other side of acceptance and have been trying to begin unpicking it. More effective meds would be great but in the meantime they are now are at the lowest dose for years.

 

[Barbella]

Thankyou Sundacola for sharing your journey and alot you have said has been taken on board.
Have you had any experience with Medicinal Cannabis. Im in Australia and talking to my doctor to make a request next week.
Best wishes for the New Year. Cheers