Hello,

I am a 33 year old male in SF Bay Area, who has been suffering from ongoing chronic pain in my neck, chest, pectoralis, and shoulder. I have been unsuccessful so far in getting the tender and tight muscles in my neck from relaxing, and have now been gradually developing worsening dysautonomia. I was diagnosed with orthostatic hypotension causing mild to moderate POTS last year at Stanford by Dr. Jaradeh, who runs the autonomic disorders program there. Recently my standing blood pressure has been dropping as low as 65/45. (My sitting blood pressure has always been around 115/75.)

It all started 5 years ago, in 2016. I had been performing a great deal of upper body calisthenics--more than I'd ever attempted in my life. Everything was fine, until one night my pec minor muscle seemed to seize up extraordinarily. I woke up in a fetal position, unable to lift my right arm, like it was locked solid.

Over the next 4 months, I regained the ability to lift my arm up. However, in the process (and perhaps due to the misguided insistence of my PT that I try to do wall push-ups and straighten out my shoulder by strengthening my scapula), my neck muscles now became incredibly tight as well. So at this point, although my pec was no longer locked up, I now had terribly tight and tender scalene muscles and upper trapezius, as well as painful muscle tissue all along and underneath my right collar bone, from the AC joint to the SC joint, and along the subclavius. In fact, the SC joint area and the thoracic outlet is by far the most painful and tender.

Fast forward 5 years, and over time I've accumulated symptoms of IBS, then dysautonomia in the form of brain fog and orthostatic hypotension. I also have muscle pain in my calves that makes standing painful. Through extensive labwork, we've ruled out any kind of pathogen or B-vitamin deficiency. What seems to remain is the possibility of TOS, or some related syndrome of neck and chest wall pain, going basically from the pec minor, through the thoracic outlet, and up the scalene and upper trapezius.

However! In all of this, I've been seen at Stanford Pain Management, Sports Medicine, and the Autonomic Disorders program, as well as by a neurologist at Palo Alto Medical Foundation. BUT, every time I mention to a GP, sports medicine doctor, or pain management specialist, I always am asked to do things like raise my hands above my head and put my fingers together, or otherwise test for weakness or numbness. It seems that every time, I am being tested for positive signs of TOS, but because my arm has pretty good function and don't have symptoms going down it, my terribly sore and tender scalenes go completely untreated. I don't know who to turn to, or if a vascular surgeon would even consider my case, since I don't seem to have TOS on paper. Every second though, I have terrible pain in my neck and chest, which and general dysfunction in my shoulder and scapula. Attempting to do a push-up reveals how badly imbalanced things are, and I get terrible pain in my neck and subclavius when I try.

At this point, I am basically wondering... should I go to a vascular surgeon, in hopes that they'll diagnose me with TOS somehow? I have hope that something like Botox injections could break this cycle and make PT possible (I've tried PT 3 separate times, each time with no real lasting results, although when the therapist gently massaged my upper thoracic and neck area to try to release the trapezius muscles, there was some partial relief for a few minutes).

So far, the neurologist at PAMF laughed at me when I suggested that Botox could be used to relax my upper trapezius muscles. And yet I've read there are clinical studies from UCLA showing the efficacy of Botox for people with neck pain. I am tempted to try and schedule appointments at UCSF or even fly down to UCLA to see if that might help. However, I am concerned that unless I am seen by a doctor who is willing to diagnose my condition as nTOS, I will not receive injections in the right places (like the scalene, pectoralis, and subclavius muscles). The dilemma is that I am unsure how who to even talk to about getting to a TOS doctor. Should I just book a flight and see one at Johns Hopkins, where I've read that Botox has been successfully used on TOS patients? Or Mass General, with Dr. Donahue?

Thanks for reading, and I apologize for the long message.

Check out the TOS sticky threads so much good info in past posts.
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Trigger point information {TrPs} for short

Thank you, Jomar!

I will certainly go through the threads you linked. I have tried trigger point injections with the doctor before, but the relief was temporary. What could be much more beneficial (besides Botox maybe, which I am still trying to look into) might be so-called myofascial release... if it's possible to release muscles as tight and painful as my upper trapezius and scalenes. It couldn't hurt to have a good DO or PT work on it (if I can find one). My sports medicine doctor also mentioned dry needling as a way to work on trigger points, or just using a theracain.

I have the theracain and haven't been able to make a dent in it, which makes me suspect it's TOS and not just a trigger point. I think where I'm going with this is that I'll probably need to look into a combination of PT and more advanced treatments for TOS like Botox....

Other things you'll see mentioned in stickys -
Top rib mobilization
manual TrP work- I had a pressure pointer but it didn't work as well as small ball on wall or floor or fingers..They have a very good chart on their website for helping to find the spot for each symptoms..

you won't resolve any muscle issues until trigger points are released..
only very gentle passive stretching & posture /body work , pushing thru will only aggravate the TrPs

https://www.neurotalk.org/members/100-albums422.html

Hi Lester,

Your situation is very specific and I'm not suggesting that this is the cause- only that the incidence of "coat hanger pain" is very high with people with OH and POTS. Maybe it exacerbates the original injury or makes it difficult for it to heal?

There is a lot of stuff on the web. This is from Nature:
"Neck pain was reported by 53.6% of subjects. Orthostatic hypotension was present in 57.1% of subjects. Neck pain was reported by 75% of subjects with OH and 25% of subjects without OH (P<0.03, Chi-square). Features of such pain included positive correlation to upright posture and exercise, and relief when lying flat."

Btw, I also see Dr. Jaradeh at Stanford. And whatever the problem is, I think finding a gifted PT can really help. When I was doing IVIG, my PT designed a program that was supine and then mixed supine and upright to slowly get me back on my feet. For what it's worth, I had fairly severe pain/numbness/odd sensory issues in my left arm/chest/neck/and sometimes face and it was not interesting to my doctors because it was so non-standard.

Good luck.

I think you're right! My last physical therapist was a sports medicine guy who worked mostly on athletes, and he seemed convinced that the issue was just "muscle imbalance" in my scapula and shoulder. He kept telling me that it was all about strengthening the counterbalancing muscles, but he never addressed the fact that my neck and trapezius were just getting more and more tender the more exercises I did, even if it WAS improving some kind of muscle imbalance. Actually, one issue with that might just be a trigger point in my pectoralis, because that's what seems to be "winging" my scapula and shoulder to an extent. It's also giving me some dysfunction/pain in the collar bone in the AC and SC joint areas. Unfortunately with that I think I just have to leave it alone or else it will get worse! So I bet you're totally right that these trigger points need to be addressed first. It's just so hard when things are seized up, especially in the scalene area, which seems to be least amenable to TrP therapy so far (and why I wanted to look into Botox).

I think the next PT I go to will have to be someone who is aware of the importance of releasing these trigger points with some manual technique. The PT I had before my last guy was much better, and I remember feeling a lot of relief when she gently held her finger on some crucial muscle area, and I felt the tension gradually melt away a bit (but only after she had her finger on there for about a minute).

Hi unjour!

Thank you for the response. It's interesting to think about how the OH could be related to the neck problem. I've heard of people having POTS also experiencing the "coat hanger" pain problem, which is interesting because it's in the same area that I experience my pain. However, I will say that my dysautonomia symptoms didn't start until after a year or two of the neck pain (the order of progression was: muscle problem in my pec/neck alone in 2016, but getting worse in the neck in the start of 2017, IBS starting later in 2017, calf muscles start to feel tender and knotted up starting in 2018, then mild dysautonomia in 2019, worsening just a bit in 2020 and being diagnosed with POTS/OH).

My personal theory is that the nerves and muscles in the neck are unhappy from all the compression, and from what I've read it's not uncommon for people with TOS to have dysautonomia. Thankfully I don't have any of the other syomptoms associated with autonomic neuropathy, like dysfunctional sweat responses (I had the table tilt test at Stanford and they also measured my sweating, which is normal).

Dr. Jaradeh did prescribe florinef for the POTS, although I haven't had the need to take it because I don't feel really bad enough or been at risk of fainting. However, things have been getting slightly worse since then. My reasoning before was that there seems to be a clear issue going on with my neck that I'd need to try and address much better than I had before before doing just medication.

Btw, a lot of bloodwork was done to rule out inflammatory causes of autonomic neuropahy, which all came back normal, although my CoQ10 was low (or rather, the percent of oxidized vs. un-oxidized CoQ10 was higher than it should be), so I am supplementing with ubiquinol (didn't affect any symptoms, but in labwork it raised the un-oxidized CoQ10 to be well past what it should be in the blood).

Anyway, I'm rambling a bit, but I definitely agree that finding a good PT is going to be important here. I was thinking about looking at UCSF in the future, since at the moment my insurance doesn't cover Stanford (but that should change and I'm going back to Dr. Jaradeh this Fall). My biggest concern right now is trying to find a medical group or clinic that has people doing both PT and something like Botox for the neck, if that is indeed going to help with any potential TOS. I bought the Peter Edgelow kit myself and have the top rib mobilization stick, but am somewhat at a loss even with the DVD instruction kit on how to make progress here (the three PTs I've had so far at different times aren't really aware of TOS or the Edgelow protocol). I do have a copy of Clair Davies' Trigger Point Therapy Workbook, so maybe I need to just work at this gradually myself while I look for a PT that can help me with some manual release as well.

I have POTS and had bilateral arterial thoracic outlet syndrome. Having surgery two years ago to relive the thoracic outlet syndrom definitely helped my POTS symptoms significantly (I'm not bedridden anymore and am not dizzy when I turn my head) but has not resolved them. My stomach issues improved greatly as well, along with brain fog. I recommend Dr. David Whitley, a vascular surgeon in Birmingham, AL. He used ultrasound and other means to diagnose me and was able to tell that my subclavian arteries were 100% compressed depending on the position of my arms. While he did not suspect a link between POTS and TOS, I found that relieving the TOS helped my POTS symptoms. It definitely helped me regain some quality of life. My mother had the same surgery for her arterial TOS (she only had it on one side). Dr. Whitley had recommended PT to us first, but it did not help us due to it being the rare arterial form of TOS.

I pray you find relief!

I regularly see a orthospinologist chiropractor who helps me with residual symptoms of TOS, as I have frequent joint subluxations which can cause a recurrence of symptoms on a much smaller, less-debilitating scale. I highly recommend this orthospinology technique, which is safe for TOS. If you have TOS, you should never let a chiropractor manually adjust your neck.

Thank you, Rachel! I am sorry to hear what you've been through, and am glad to hear that the surgery provided some improvement.

It is quite interesting to hear that you experienced POTS and TOS together. I myself am somewhat skeptical of the link, but there doesn't seem to be any other explanation of it.

I have in fact scheduled a consultation with Dr. Donahue at Mass General, and will be getting Botox and a CT scan this December. So presumably if there is indeed arterial compression it will show up on the scan.

In my case, the symptoms do not seem to vary based on my arm position. The progression has been gradual and steady, starting with muscle pain in my calves, and now POTS, OH, and finally brain fog, over time these past 5 years. If it's as simple as arterial compression, I would be quite happy to get relief from surgery, of course.

On the other hand, I have to wonder if this is somehow a neuropathy triggered by the TOS. I have been referred to a general neurologist at UCSF, and plan to ask them about what kind of imaging or other diagnostics we could do to look for a neuropathic explanation. The fact that I have OH and also general muscle and calf pain makes me wonder if a skin punch biopsy to look for small fiber neuropathy is in order.

Hi -

How are you feeling?

We’re you successful in finding a doctor for your symptoms.

I’ve had TOS & Pec Minor for 5 years now.

I do receive Botox injections for my right side scalenes, and pec minor. Also trigger point injection for pec minor.

The injection help about 50-60 % relief. I couldn’t imagine not having them.

Very temporary relief. Botox every 10 weeks and trigger point injection every 6 weeks.

My pain management specialist is at UCSD. I’m also working with a vascular surgeon at UCSD.

The vascular surgeon is saying to have a pec minor tenotomy. My other option is decompression surgery.

It’s been such a long path I’m not sure what to do.

There’s no guarantee any of this will work.

Best Wishes,

Cindy