Treatment Success For Aches And Pains Indirectly Caused By Dysautonomia

[Csmith3]

I am posting to canvass opinion and experience on treating muscular pain which may arise from habits brought on by living with dysautonomia. The context is that I am currently seeing a physio and treatments which she would expect to have a sustained effect are wearing off very quickly. She thinks that many of the aches and pains are brought on by habits which would help symptoms such as hypotension and is wondering what level of improvement is reasonable to expect (i.e. what is a realistic goal?)

I am a very shallow breather and tend to tense up all the muscles around by chest, ribs and shoulders to the point where it is painful to breathe more deeply. Even with awareness that I do this and trying to undo the habit I struggle to resist this tension, particularly when standing, because I am convinced it improves my standing tolerance. This has led to me getting pain around the thoracic spine and shoulders. Apparently many of the autonomic nervous system nerves/ganglia are in the thoracic spine (apologies if I haven't used the correct anatomical terms here).

As if to counter this, my knees are permanently bent and groin area is very tight. So I have developed an odd seesaw posture whereby if I am lying down I can either keep my ribcage on the floor or my thighs/knees but not both.

Is anyone else a very shallow breather with similar aches and pains? Have you had any physio treatment? If so, did you see any medium or long term improvement?

Many thanks in advance.

[janiedelite]

I have had such bad pain that up until December, I couldn't flex my neck forward at all without having severe radicular pain in my arms. Keeping my neck somewhat extended at all times and avoiding laying down was the only way I could manage anything.

In December I started seeing a physical therapist who specializes in myofacial releases (the Dr. John Barnes technique). I've been to over 100 PT visits in the last 5 years trying everything from exercise to the Mckenzie technique. I only got worse. Even massages made me more painful in the long run. I've been in 2 bad car accidents which caused hip/neck/back issues, and I often sit or stand slouched because of BP issues. Since starting with this PT a couple months ago, my chronic headache is GONE, I can sit and read a book or look at my phone and not have a migraine afterward, and I wake up at night half as many times due to pain. This technique is very gentle. The PT is having me do some VERY mild stretching or strengthening at home, but knows how hyperactive my sympathetic nervous system is and doesn't want to cause any more tension.

My cardio doc also feels that I may have underlying hypermobility, which hasn't been exacerbated at all by this PT. I do often get an exaggerated sympathetic response during my PT sessions (flushing, high BP, tachypnea), but it's very transitory.

[Csmith3]

Thank you. In a bizarre mix up I had at a spa stay, I ended up meeting a therapist who specialised in myofascial release and he thought it could be helpful for me. I live in a different area to the therapist so I didn't follow it up.

I suppose I am one of those people that thinks something so gentle can't make much difference. I know really that this view is flawed! Thanks for the feedback - I might give that a go.

[sue1234]

I cannot lay flat without a pillow. If I do, I have a big gap between the surface and my neck and middle back. I have too many exaggerated curves in my neck and back.

[janiedelite]

Cath_UK, best wishes on getting help for your pains. In my experience, not every physical therapist (even using the same method) is equal in expertise. Sometimes it takes a lot of trial and error before you find something that helps.

[comfortzone]

I know with a connective tissue disorder everything in me is weaker and fatigues quicker than what's seen as normal for many. You can view pictures in books of EDS'ers laying a certain way on the floor that is characteristic of them - also other 'posturings' for lack of a better word ... holding their heads up on a palm at a desk is another - resting at the 'end' of the range of motion giving rise to tendonitis in many places - and the grown ups that were 'floppier' babies and poor in gym as adolescents and adults - have a hard time getting stronger. So you have weak muscles trying to do the job normal connective tissue would do - holding us together - which fatigues muscles sooner again ... we will shoulder shrug, sit with rounded backs for want of a stronger core that simply isn't there. Hard to know what to make of it - but the body is smart and it will regroup to have it's owner still be able to do things - like walking upright - even though their core is super weak... that strains muscles and tendons and ligaments.... So what causes what I really dunno ... but gotta love how we adapt. Trying to fix our faulty adaptations - has to really be 'worth' it - because the training that PT brings with years of us doing things another way - can be filled with slow progress and frustrations. It's not impossible work - but rarely does anyone have the money and perseverance to stay 'on-plan' well after the PT visits are over... it's too easy to slip back into our adaptive styles. I hope I'm wrong in this as I start PT again soon - ever hopeful for some pain relief and real answers!

[ramakentesh]

One of the places that my ank spond attacks me is between the ribs and the spine making breathing painful at times. Im not saying you have it, but I do know that I developed it at the same time as POTS.

[firewatcher]

I have awful post exercise muscle soreness/weakness. It is so bad that it takes me 4-5 days to recover from one hour of exercise. I also wake up most mornings with moderate pain in my legs, almost like I've been climbing stairs all night. It eases up through the day, but I don't remember a day in the last 10 years without pain.

[Csmith3]

Thanks for your posts everyone. I will follow up the suggestions.

I have been working on my core muscle strength for 18 months or so, often going to classes 2 or 3 times a week. I saw improvements in terms of my ability to carry out the exercises but my posture, aches and shallow breathing persisted, so 3 months ago, I thought it was time to try physio.

I found a physio who I felt was most likely to have the skills, interest and perseverence to help me and she has been great. Many of the muscles around my ribs and shoulders have been released and its one of those things that you don't realise the tension is there all the time until it has gone. It is no longer difficult or painful to breathe more deeply. There are still areas that are proving hard to fix (e.g. stiffness in thoracic spine which to an extent are still limiting how deeply I breathe) and I am keen to see if I can make any further improvements.

What is interesting is that since this recent success, my resting heart rate has dropped 30 to 40 points. Upon standing, my heart rate is still increasing but is attempting a recovery before rising again. Things aren't perfect, but these are very significant improvements for me and have lasted for a month. Obviously I am wondering if this is going to continue. Fingers crossed.

What I always find difficult to assess is which came first; POTS or muscle tension/insert any other medical symptom. I have had POTS for too long to know the answer to that question but I suppose my assumption was that POTS came first and contributed to the development of other problems. It is interesting that some members of the forum, such as Ramakentesh and Sue, who have developed POTS during adulthood can make the connection between illlnesses starting at the same time as POTS rather than one being a result of the other. For people like me who had gradual onset POTS, I just wonder if the other fixable medical issues could be addressed early on so that teh unfixable stuff like POTS doesn't become so debilitating.