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Sticky Blood-Hughes Syndrome Support
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Does APS cause nerve pain?

I've had APS for nearly 30 years and been on Warfarin for about the last 20.

Recently, I have terrible pain in my left arm keeping me up at night.

Cervical X Ray shows narrowing but not unusual for a woman of 52.

Taking Robaxin doesn't help much at all. Went to a chiropractor who said I have a bunch of very tight muscles in my left upper back.

Nothing I do seems to help and it's getting worse over time.

I'm starting to wonder if APS might be a factor as I've never had anything like this before and don't know anyone else who experienced similar.

Would love to hear from you if you have had APS associated nerve pain or muscle bunching.


9 Replies

Tender Points are common. This is more to do with the fact that once you get into pain you tense up and that then starts a vicious circle. I found something like myofascial release helped me a lot. There are practitioners scattered around the country. Have a search in google.

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Out of interest are you having regular test of Iron, Vitamin B12, D and Thyroid done, as if any of this is out of whack you will have more pain! MaryF


Hello Mary. I am not but maybe I should do just that.

Thank you for the advice.

- Jeanette


Absolutely-- i get shots in my neck - back upper and lower -- sometimes the muscle spasms are so bad they actually bend the needle when Dc's trying to push it all the way in or even trying to pull it out - my arms -hands- fingers- legs all affected -- I have two types of tremors -muscle spasms all over --carpal tunnel in hands and wrists-- I also get sores on feet , the skin cracks and falls off and the fishers open up clear to the bone -- last year came close to losing my left foot because of them . yes there is plenty of documentation out there that APS is the cause. mine started in 2009 . i take meds for them -Muscle relaxers - pain killers etc. Do you get spasms where the muscles just pulsate all over at a very rapid rate. i tore my lower right side muscle from a spasm .they get so severe .


Yes unfortunately I too get severe muscle spasms in hip area and in only foot I have! My back and neck and newly MY shoulders! WASNT SURE IT WAS APS, but now I know! My sister has neuropathy in her legs! I'm sorry for ur pain, but flexeril does help, but my insurance company says it interacts with cymbalta and won't let me fill that prescription anymore! It never interacted b4 with cymbalta, but why do I know! I'd love to know another muscle relaxer I cud take! My vascular surgeon gave me Valium, but it's was temporary cuz they become habit forming! They did help tho!


Thanks for your reply. I've been taking Robaxin and night time Acetomenaphin but still having to get up several times at night due to rhe intensity of the pain.


I get nerve pain in right arm.less nowadays.it felt like it was going to snap.Once years ago before diagnosis APS I had to go to A&E as any movement and I was screaming. Unfortunately my own GP was the on call locum so just said take paracetamol ! Highering done of Pregabalin helped but that has caused other problems so hey life is sent to try us.


I use Gabapentin for outer thighh neuropathy on both legs



Yes. I am in the throes of trying to figure this out. I was very recently diagnosed with secondary APS and just 3 weeks ago was hospitalized with DVT's in arm. It is likely the primary auto immune disease in Lupus, but not yet 100% conclusive. It definitely does fall in the connective tissue category- is not Schogrins , not Scleraderma,

To answer your question- my " veins " throughout my body felt very painful immediately after the dvt event. My specialists are trying to determine if it's small fiber neuropathy, as nerves lie just under veins, -and in muscles which wrap around veins. My neurologist is ordering in nerve conduction studies next week . Rheum thinks perhaps it's this neuropathy. The vascular surgeon thinks not, Perhaps a vascular irritation. They all agree I'm " safe" because I'm now on Coumadin, but we can't keep INR in safe zone- I keep dropping to low 2's.

So, ask a neurologist about a nerve conduction test. Cryptic small nerve fiber neuropathy. ( the acronym sounds like C-Span- -the news station the the USA) .

The dust has not yet settled with my case- but yes. This can happen with APS, but make sure vascular integrity is ok also. Don't just assume it's nerve pain only.

Best of luck. It really does feel awful and I'm on no sleep also. And my surface veins pop up with it... sometimes.


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