is physical therapy really going to help?

[LunaCinder]

Hi all,
I hope you are well. I have been finding myself upset and frustrated as doctors, strangers, friends, and family give me repetitive and unsolicited advice. This includes but is not limited to: ibuprofen, dieting (i have ibs i already do), exercise (i already do), and physical therapy.
My body rejected Cymbalta and now all anyone will suggest is exercise. Exercise has not worked for me (even when I keep it up for months+), and results in more fatigue and decreased functionality for me. Everyone keeps telling me to go to physical therapy, so I wanted to ask other people with fibro if it's really worth it? Is physical therapy helpful for fibro, coming from actual people with fibro rather than doctors who scoff at me and look at me like I'm crazy.
Please let me know if you all find it helpful, or for those who didn't what may have been more helpful against the pain?

 

[JayCS]

Is physical therapy helpful for fibro, coming from actual people with fibro rather than doctors who scoff at me and look at me like I'm crazy.
Please let me know if you all find it helpful, or for those who didn't what may have been more helpful against the pain?

Normal physical therapy is harmful, sometimes very, for most of us.
We have to start low and go slow.
Stretching, yoga, acupressure, breathing exercises etc. in our own pace, so not pressured by physios or groups/classes. I by far prefer youtube for all these. And using them get all my local pains and even other symptoms down to almost zero.
But if we do too much we overdo it and that increases the deep muscular Ache, at least mine.
Gentle knowing and listening physios are able to help to a certain extent (osteopathy, myofascial release, chiropractic if good, acupressure). But in my experience it's best we learn from them and then do things ourselves, listening closely to our body's needs.

What they are right with is we need to keep in some form of light movement.

 

[sunkacola]

Physical therapy has helped me a great deal with specific things like the non-fibro-related back issues I have, but I wouldn't necessarily advise it for dealing with fibromyalgia.

However, exercise is vitally important.

As Jay says above, the key is finding out what kind and degree of exercise works for you. Being sedentary is 100% bad for a person no matter what.

Now, most people think of exercise as something that has to be hard work and done for a certain amount of time and targeted and focused. But it doesn't need to be that. And for a person with fibro it is vital to find what form, duration, intensity, and frequency works best. This is hard for those of us used to being very active. It took me a long time because I kept trying to do too much. I would start slow and low, but want to build up to the level I used to do and get frustrated when that didn't work and in fact backfired.

What each of us has to do is find out what level does work, and for some that's pretty mild. A walk around the block or the yard or even the house. Doing some stretching and a couple hatha yoga poses. Maybe 10 minutes of Pilates or just putting on music and moving around to it for 10 minutes. Going out in nature and just wandering around. Whatever moves your body and feels good. Emphasis on the feels good.

Invariably when people say "exercise has not worked for me" it means they have not found the right way to do it.

Or, do you mean by "exercise has not worked for me" that it has not made your fibro symptoms go away? Because it won't do that. But what it will do is keep them from getting worse because a body that doesn't move cannot be in good health and if your health deteriorates your symptoms are guaranteed to get worse overall. And, moving your body will be beneficial also to your state of mind, which is equally important.

 

[JayCS]

Or, do you mean by "exercise has not worked for me" that it has not made your fibro symptoms go away? Because it won't do that.

After further thought I agree. I hadn't fully distinguished between physical therapy and exercise. My 20' table tennis, 3-4x10' cycling, a one-minute workout, gardening regularly throughout the day is exercise in this sense, and this as said does not make my fibro symptoms go away, it's for fun (state of mind) and to stay fit. But the stretching, back/yoga exercises, acupressure etc. I mentioned I would count as physical therapy that does make my local pains - called up by fibro - go away, but it's not exercise in that sense, it's more specific and aims at doing exactly that.
Oversimplified: "Exercise" doesn't make fibro symptoms go away, "exercises" do.
Agreed?

 

[Harpy]

Hi all,
I hope you are well. I have been finding myself upset and frustrated as doctors, strangers, friends, and family give me repetitive and unsolicited advice. This includes but is not limited to: ibuprofen, dieting (i have ibs i already do), exercise (i already do), and physical therapy.

My husband isn’t supportive at all and never asks how I am feeling. I never let onto him how much I am hurting , just not worth it.

My body rejected Cymbalta and now all anyone will suggest is exercise. Exercise has not worked for me (even when I keep it up for months+), and results in more fatigue and decreased functionality for me. Everyone keeps telling me to go to physical therapy, so I wanted to ask other people with fibro if it's really worth it? Is physical therapy helpful for fibro, coming from actual people with fibro rather than doctors who scoff at me and look at me like I'm crazy.

I seen a physiotherapist for 7 years. He did nothing at all for my fibro only helped relax muscles around my dodgie spine.
I now see an osteopath, who I get alot more relief from With his massage, cupping and dry needling Not long but worth it.
I try to keep active like, potting plants, looking after the pets, caring for my mom and grandkids ( who are my world). As for exercise I park further away from the shops ( more so to protect my car) and walk in. I will always walked around before I shop and walk to the car after each shop. But that’s about it. Better than nothing I suppose.
Find what helps you and try to blockout those nay sayers that don’t understand what it’s like to live in pain.
I purposely talked to a dear friend ( with my husband in hearing range) about a recent appointment, I was telling her how I told the dr that I look perfectly “normal” on the outside but on the inside I am in agony.
I hope your well and can find some help in your replies.

 

[LunaCinder]

Hi all, and thank you very much for the thoughtful and helpful responses.
I think I am struggling with what "exercise" might look like, as some of you suggested. In the past I was a nationally ranked and intensive dancer, which definitely set the tone. Additionally, most of my jobs have been physically intensive. Since becoming more disabled though injury, stroke, and increased chronic illness I've certainly been struggling to adjust. Not only this, but my family is struggling to adjust as well. They really push for me to do intensive exercise, physical therapy, or tough physical tasks. They seem to think that fibro is just being physically weak? I'm not sure why, but no matter how many conversations and explanations we have they cannot grasp that it's not just a lack of physical strength.
What I do now that might count as exercise is gardening and birding (birding is almost fully adjustable to accessible needs, on worst days can be done from sitting inside my house or a car), but besides that I am unsure. I typically can't stand for long or walk far without resting.
I've been in pain for as long as I can remember, I know it doesn't ever go away fully. My goal is to not be in excruciating pain. Often it is to the point where I can't stand up on my own, and it interferes with my daily life. Sometimes my cane is not enough. I want to get to a point where I can safely function again.

I think I'll try all of these suggestions (not all at once!) and experiment, and I am very grateful for these suggestions. It's nice to be heard, and it's wonderful to get really supportive advice that is truly thoughtful.
I think I'll try and add stretching/yoga to my daily do's first, as that seems to be a common theme

 

[JayCS]

They seem to think that fibro is just being physically weak? I'm not sure why, but no matter how many conversations and explanations we have they cannot grasp that it's not just a lack of physical strength.

I'm working all the time at trying to describe mine better, and often now say it's not lack of physical strength at all, my exhaustibility seems a lack of muscular stamina at a cellular level. I tested the other day, thought 20 push ups, but managed 30 with no problem or backlash, because I do them in 1-2 minutes. In the 3rd minute of a workout my body quickly breaks down, or rather puts brakes down, despite the strength, and even the energy often feels "there" altho I can't use it.

What I do now that might count as exercise is gardening and birding

Ha! Me too. Most of the "reasons to be cheerful" I note every day on my blog are related to new blossoms and how my bird friends are fairing. So you might enjoy and share your experiences on our gardening thread?

Often it is to the point where I can't stand up on my own, and it interferes with my daily life. Sometimes my cane is not enough. I want to get to a point where I can safely function again.

Dunno if your body is like mine: I either prepare my muscles & tendons with twist-stretching before for a minute or two before I get up. Or I move very slowly and carefully, bit by bit, deliberating how I can save energy on each centimetre. When my wife offers to help, it often hurts more, because my body isn't prepared to do it quickly, I often "sprain" my foot bones. And mainly because I want to use it, not lose it. When I occasionally accept the help it's for relationship reasons and to help her cope never actually being able to do anything for me.
Getting to know my body's new capabilities and capacities does allow safely functioning if I stay under the limits. If I or anyone else expects me to go over them, that's when it can get dangerous. Some days I can use my old bikes with high saddle and a centre bar, but often I use my "disabled bike" as I wryly call it. And am much more careful near roads. Keeping under the limits keeps my fog down and my slow energy up, so I can do more and more safely. Keeping the fog down and using my mind for control to keep me safe. If the fog's up the workaround is stopping in my tracks and going even slower, so nothing goes wrong. Of course I still drop or "throw" things around, some days more, some days less, but things aren't as important as me, that's a clear priority. When that happens, again I stop in my tracks, instead of panicking and clearing up directly and perhaps injuring myself if it was glass. It's mindfulness, I'm just realizing - in that moment I re-assess what's up, usually by detaching from the mishap, focusing on anything that needs to be done (like stopping water running somewhere), re-assure and "put myself in safety first".

As a dancer you might try/like my technique of twist-stretching in the ballet fifth position, feet alternately at the front, arms upwards and outwards. When balance is a problem, third position, but twisted outward as far as possible so all my tendons get a good stretch at the same time.

 

[sunkacola]

I think I'll try and add stretching/yoga to my daily do's first,

That's a great idea.
I understand what you mean when you say it's a struggle to find the right exercise level, because I used to be super active. I did a hike of several hours/miles up and down a mountain at least once a week, and was a dancer and worked out with weights. On a normal day, I wouldn't ever sit down until it was time to eat supper. It takes a bit of time to adjust to things being radically different from that, so don't feel bad if you are not there yet.

They seem to think that fibro is just being physically weak? I'm not sure why, but no matter how many conversations and explanations we have they cannot grasp that it's not just a lack of physical strength.

If you have tried multiple times to explain this to your family, then they are being more or less deliberately obtuse, and continuing to try to explain it to them won't get you anywhere. My suggestion is to get very simple about it. Let them know, in a very nice way, that you know they only mean the best for you, they they love you and you love them. And that, however well meaning, what they are doing in refusing to take your word for it and continuing to try to push you to do things that would only be harmful, is hurting you.

What I did one time was tell someone: "I am not asking you for help or to understand something you have never experienced. I am not asking you to make it better. All I am asking is that you not make it worse." Let them know that they are making things worse for you by their actions and words, and that you have to do what you need to do to take care of yourself. And that, therefore, you will no longer listen when they are talking to you like that and will in fact simply leave the room. Then, follow through and do exactly that. Probably won't take more than a few times before they stop.

We cannot expect people to understand. But it is 100% reasonable to expect people not to make our lives more difficult than they already are.

 

[JayCS]

obtuse

Ha! New word, like it.

All I am asking is that you not make it worse." Let them know that they are making things worse

Definitely like that. I only have a very few generally obtuse people, mainly people that normally get it, but sometimes get obtuse and then don't take no for an answer. And like you say, that's a no go, so I just go.

@LunaCinder - if you want to delve deep on getting people to understand we've got a resource thread on that here.

 

[Auriel]

Hi lunacinder (new welcome from me) ., I've never found physical therapy that helpful for fibro pain as it's neuropathic in nature (so I stopped) the only thing that really made a difference was cutting caffeine and gluten, my gabapentin helps (doesn't make the pain go entirely cos it always comes back) I get some reprieve from it (which helps with tasks) all of the above people can't really help (they can try but......) welcome again, hope you stay a while ️ ️

 

[JayCS]

Cort Johnson blogged "Exercise Triggers Major Immune System Letdown in ME/CFS" yesterday on healthrising, focusing on a recent study on immune cells with exercise.

Post exertional malaise (PEM) is what they call it in CFS, and that fits for me, if not for all of us, altho I am not officially diagnosed with CFS. But "fatigue" with Ache is my core symptom, and one of the 6 symptoms on the SSS of the ACR diagnostic criteria.

Blood flow, oxygen utilization and energy production, similar metabolism and protein have all been found to be deficient in the recent past. Now published in January 2023 a study found that CFS immune cells (esp. NK) hardly react during exercise, like healthy ones do. So they don't keep the challenges produced by the exercise in check. Instead, they try to start clearing up afterwards, when healthy ones stop. But the inflammation etc. has then already become so high, and they are too weak & antioxidants so low, that they partly have to give up and die.

Starting low and going slow I spose will enable all these parts of the body to cope. Antioxidants etc. can boost a little (I take >15).

Articles/studies like these should be rubbed in the face of doubters till they cry ... with empathy.

 

[FeelTheBurn]

Stopping for Christmas and a holidays made it horrendous for me.
I found:-
a positive outlook building on success
Moderate exercise
Getting as much reasonable sleep as possible
Regular small meals
Slowing gut transit and therefore not flushing nutrients out
Vitamins

 

[Auriel]

Hello Mr @FeelTheBurn welcome to the forum ️ , thanks for putting what's helped , also what vitamins do you take?(I take a few too)
️ ️

 

[Judy Jones]

Hi like you I've tried and done most things- I find swimming best as there's no impacted and the warm water really helps. Even just floating and walking back and side ways helps with unused muscles. I see Ositopath 4 times a yr for dry needling that really helps with the pain.

 

[Amesalot]

Hi @LunaCinder
I completely understand your frustration. And I’m sorry to hear you’re going through such a rough time.
I have been in physical therapy since diagnosed with fibromyalgia. For me, I feel like it does help the pain. Some sessions when my pain is lower we work on different movements. I’m able to take that set of movements home with me to work on, as my form of exercise. Other days, especially when my pain is higher, the therapists will do myofascial work on my body. Myofascial release is a type of therapy where the practitioner massages out the tightness in your fascial tissues. This really helps with the pain.
I know you said you exercise, but afterwards are in more pain. What type of exercise are you doing exactly? Personally, I can’t do what I used to do as exercise, instead it looks much different. I’d consider it more movement. A set of specific movements to work on certain areas that need it that day.
I enjoy going slowly through gentle yoga poses, sometimes I can only handle doing floor exercises on certain days. If I’m having a better day, I’ll take a walk. I use my body weight to build muscle. I don’t have regular pool access but swim activities are great.
Every day I move as much as possible, whatever that movement might look like. I no longer do high level yoga, take cardio kick box, go for a run, or lift heavy weights. I do miss those things but I know I would be in a world of pain afterwards if I did.
I hope this helps you. Physical therapy has been so helpful for me. Hopefully it will work for you too.