Coat hanger pain - any suggestions for relief please?

Samuel said:
that spot you marked:

it is precisely one of my bad spots. one side. it feels like the source of much, including coathanger and ulnar nerve issues. worsened by typing etc. is that near the place on the spine above is c# and below is t#? i have a bulge there.

one doctor told me it was common with retroviruses. but i don't know where that information came from. hiv- htlv-.
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Samuel, I have the same spot, on my left. Then it travels from that spot on my left up to through the neck like a wire along the left side of my spine. As a result I'm often pulling hard on that side. Oddly I don't have much pain out wide, but the closer it is to the head, neck and upper shoulders and that spot on the spine along my left side, the worse it is. It's like tightness and inflammation. Also TMJ on that side. Same with the nerves that go to the elbow as you mentioned.

I have nothing to offer, I have never been able to fix it, find out what it was. Sometimes it feels like a mass of some sort is in that spot twisting all the nerves around. Osteopath no help, MRI normal. No stenosis. Massage and heat makes it worse, muscles relaxers don't help. Tai chi to move the nerves did not help. There's a thread on PR about neck compression that I thought might be related, or else I thought maybe some form of myatonia.

Very frustrating!
 
Hi @Liv aka Mrs Sowester . My friend uses Baclofen as part of her pain meds. She also started Naproxen which is NSAID, stronger than Brufen, but better on the gut than Diclofenac etc. She has IBS as well.
Can't remember have any of the vasodilating rubs such as Tiger balm or Ralgex been mentioned. Also what about a TENS machine? I find mine can sometimes shift my back (bone-related pain)
Friend is also due to try low dose opiate patches soon.
I have been using some Butrans for a few months and they have transformed my life.

Has this all been aggravated by your trip to Citizens advice re PIP?
So sorry you are suffering so much for this.
 
@Liv aka Mrs Sowester please make sure you get it checked out too if you haven’t already. My brother’s partner (healthy) has just undergone an emergency operation because it was discovered she had a nearly fully blocked artery between the brain and the heart. Her only symptoms were episodic coat hanger pain for some time and then just recently vision disturbances like a curtain falling across one eye.
 
It's using the laptop that is the main culprit I think, the pain eases if I lie flat or sit well supported without using my arms at all. I do have a curve in my spine at the base of my neck instead of mid back where it should curve, it runs in my maternal family.

My muscles keep knotting in the places shown in the diagram @Luther Blissett posted and I have a nerve tweaking in my right elbow, which is new, but the pain has eased off at night so I'm sleeping better and don't feel so desperate.

I think you're right @MEMarge the OI I had to push through to fill in my PIP form at CAB probably didn't help. Since I bought the fingertip oximeter I've realised that my oxygen sats are definitely on the low side on a normal day and my fingernails go pale blue or lilac when I'm round the 88-90 range. So where they are when my hands close up and my finger tips go purple is anybody's guess! I've got my PIP medical on Monday so I'll find out then :nailbiting:

I'm sure this is related to my OI, if I do something crazy like go outdoors my heart rate goes up into the 90s and my oxygen sats go down to between 88-93. I've ordered a blood pressure cuff so I can see what's going on with that too. When I've monitored for a week I'll show my GP. He's just referred me back to the ME clinic, but I might ask to see a cardiologist while I wait for that appointment.
 
You must be so stressed Liv :hug: I really hope you get a nice assessor and it isn't too stressful or traumatic . I will be thinking of you and wishing you lots of luck. Are you going to the assessment centre or are they coming to you?

I hope it doesn't further impact your health too badly, I know that the application process has already made you relapse :hug::hug:

Btw, have you seen there is a POTS doctor in Plymouth?

Dr Jamie Fulton
Consultant General Medicine

Derriford Hospital
Plymouth

Interests PoTS, syncope, dysautonomia, EDS


http://www.potsuk.org/doctors
 
Thank you ever so much, I'll ask my doctor about that consultant @Jan.

I had two letters yesterday, one from the ME clinic saying there was a huge demand for appointments and I'm not going to be seen for ages and the second from the DWP saying my PIP assessment has been cancelled!
Which is annoying, I just want to get it over and done with.
I am going to them because I pass as healthier than I am at home. I know I'll take a big hit flare-up wise, but reckon if I go to them my POTS symptoms will be evident, I'll get visibly breathless, my fingers will go blue and hands close up and I'll have tremors, it'll save a lot of stress in the long run!
I tend not to get anxious until the night before stressful events, but it is definitely on my mind.

The coat hanger pain is easing off, slowly but surely. I'm working my way through watching Mad Men and the cats are taking it in turns to sit with me.
 
Liv aka Mrs Sowester said:
It's using the laptop that is the main culprit I think, the pain eases if I lie flat or sit well supported without using my arms at all. I do have a curve in my spine at the base of my neck instead of mid back where it should curve, it runs in my maternal family.

My muscles keep knotting in the places shown in the diagram @Luther Blissett posted and I have a nerve tweaking in my right elbow, which is new, but the pain has eased off at night so I'm sleeping better and don't feel so desperate.

I think you're right @MEMarge the OI I had to push through to fill in my PIP form at CAB probably didn't help. Since I bought the fingertip oximeter I've realised that my oxygen sats are definitely on the low side on a normal day and my fingernails go pale blue or lilac when I'm round the 88-90 range. So where they are when my hands close up and my finger tips go purple is anybody's guess! I've got my PIP medical on Monday so I'll find out then :nailbiting:

I'm sure this is related to my OI, if I do something crazy like go outdoors my heart rate goes up into the 90s and my oxygen sats go down to between 88-93. I've ordered a blood pressure cuff so I can see what's going on with that too. When I've monitored for a week I'll show my GP. He's just referred me back to the ME clinic, but I might ask to see a cardiologist while I wait for that appointment.
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I think that in terms of your pain, the best chance of improvement is probably to reduce the OI.

"The subocciptal/paracervical “coat hanger” pain, conversely, has been hypothesized to relate to hypoperfusion of the paracervical muscles. Severity of neck pain appears to correlate with the degree of orthostatic hypotension. In both PAF and MSA, all of these symptoms improve with lying flat or sitting. The symptoms tended to be worse in the morning, with warm temperatures, straining, exertion, and food ingestion."
(https://www.ncbi.nlm.nih.gov/pubmed/14979884)
This article is mostly about migraine and orthostatic hypotension but I'm sure the same applies to all other types of OI, including POTS, etc.

Off-topic:
It is also a good example of getting the causation correctly. Usually you will find that doctors will say that neck/coathanger pain is the cause of migraines. In reality, the orthostatic intolerance probably causes coathanger pain AND triggers episodes of migraine.
 
You've got a good mix of treatment. Baclofen works on GABA-B, which might work in concert with the gabapentin (GABA-A) to aid muscle relaxation? Baclofen is especially good for spasm.

I used to get terrible neck spasms. I started doing neck exercises (slowly pulling your chin/head back without tilting it, then slowly leaning it to each side while pulling your shoulder in the opposite direction with your hand) and they've gone. But I second any posture aids you can get too.
 
Liv aka Mrs Sowester said:
The delivery guy appeared with a huge box of Epsom salts I forgot I ordered last week!Just had a magnesium soak, Mr S has liberally applied ibuprofen gel and I'm lying flat.
I've phoned the osteopath and left a message for an appointment.
I'll ring the doctor for some hardcore pain killers if it hasn't eased up by tomorrow.
Thank you lovely friends :hug:
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For some relief I use capsaicin cream at the highest dose. It does help moderate pain, at least for me.
Muscle relaxants? tizanidine or such. Heat, cold, rest and wait it out, I hope you get better.
 
Sorry to hear of your pain Mrs S.

I find with muscle pain salt is a good start like your specialist is saying and if cramping at all also calcium with VitD though with care to balance with Mg.

More cramp help can sometimes be got from cramp bark herbal tincture, really really works... sometimes! It can assist with muscle tension and is a mild anxiolytic mostly due to the way it helps relax muscle tension IMHO. Most of the time it works a treat but there have been some muscle spasms I experienced which it had no effect on.

http://herbsformentalhealth.com/cramp-bark/

Also I find it can help to be aware of building muscle tension in the first place and to act to remedy it, first by doing stuff in a comfortable fashion, with supportive furniture assisting body position so you can relax completely while doing what you like (e.g. I built an arm resting mouse table for my recliner armchair for example and have covered the chair and the armrest in foam cushions (beware chemical pong) and towelling, also in my living room I have a hammock which is really good for resting). Secondly, daily routine of stretching and where necessary heat treatment followed by gentle stretching. I stretch at night before sleeping which help sleep quite a bit as it helps release neuromuscular feedback loops.

Hops that helps.
 
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