Numb arms

[rayl]

Hi it's been a little while since my last post.I've been having issues at night with my arms going numb dead like led while I've been in bed sleeping in my side and in the mornings iam finding it very difficult to grip anything and dropping things regular I just wandered if I should start having massage to help with the blood flow.is this normal? ??

[MaryF Administrator]

Hi Deep tissue massage is not recommended, I suggest you go to your GP and do check out you do not have carpel tunnel syndrome, which can present like that, even if just to rule that out before you see your main consultant. They can do tests for this. I had them. MaryF

[ndstephens49 in reply to MaryF]

Hi Mary F.

What does it mean 'Deep tissue massage not recommended?'

Is it not recommended for APS?

[MaryF Administrator in reply to ndstephens49]

Gentle massage, not deep massage is recommended for people on Warfarin. MaryF

[ndstephens49 in reply to MaryF]

Gosh! I did not know that. I learn something new every day on this site.

My cousin, who says she has fibromyalgia and RA--which she probably does--but won't be tested for APS, swears by massage. I tried it quite a few times but hated it because it was painful to me. Like an hour of torture. Did massage 'hurt' because of Coumadin?

Nancy

[Lure2]

Hi rayl,

I wonder if you had an appointment at St Thomas as I think you talked about it two months ago? Is it a Specialist or a GP taking care of your HS/APS at present?

Also I wonder what therapeutic level of INR you are put on as I think that now your INR is too low and that is why you get those symptoms.

I guess you are not selftesting yet.

You should absolutely not go with those numb feelings and I wonder if you could have some contact with your coagulation clinic even if it is Sunday?

Please tell us how it goes for you!

Take care!

Best wishes from Kerstin in Stockholm

[rayl]

Thank you for u replies x no to self testing as of yet as inr is jumping all over the place x the mdt te have met and won't to to st thomas till I've had another MRI on brain as by then I would have been on warfarin for a year and the would like to see if there has been any change first x the arms are from the shoulders right to finger tips can carple tunnel be that bad x thanks for ur ongoing surport I don't know how I would get through with out reading this blog's x so thank you x

[HollyHeski Administrator]

HI, it could be a number of things, I have had this problem for over 2 years, you need to go to your GP and get it checked. Getting your INR at regular good range may show you if it is that, then Blood tests for vitamin B12 deficiency, throid etc should be done first, as that can cause the symptoms you have, if these come back OK, then go down the route for carpal tunnel as the admins suggest.

[rayl]

Thank you x who would be the best person to ask about getting tested for this ?

[HollyHeski Administrator]

You havnt mentioned when you are going to St Thomas? I would go to GP and get blood tests done first, talk to whoever checks your INR to see what you can try to do to get your INR in correct range and stable.

Then if bloods are ok, talk to your GP again or your consultant at St Thomas's whichever appoitment comes first.

Keep a diary of daily symptoms, how much sleep and a pain score, this can help when you see docter.

[Kalykrill]

I too have this issue. In both arms. My dr did an mri on my neck and found moderate narrowing in neck that leads to each arm. They wanted to do injections, but refuse to due to the dangers of sticking a large needle into that area in my current condition. Maybe talk to your GP to see if he can find the source to your problems.

[rayl]

I did have an xray some time ago and the found I have a straight neck which ment there wasn't a curve in the bone to help support the head weight maybe it's something to do with that ??

[Lure2]

I can only tell you that it can have to do with your HS/APS. First of all it could have to do with a too low INR. Secondly it could also be carpal tunnel syndrome. I had that before I started Warfarin and they wanted to operate but when I started Warfarin I was better and very soon it disappeared.

I know prof Hughes has written about carpal tunnel syndrome in one of his books with our illness and that to his surprise anticoagulation helped. We have very thick blood and many things get better with anticoagulation.

Hope you see your Specialist you told us about soon. Also it can of course have other causes but I think you should start with the too thick blood as Holly Heski suggests also.

Kerstin

[Rosemary76210]

I have found that hugging a fat pillow while sleeping greatly helped with the numbness. I still have trouble with my hands in the morning though.

[molly1969]

I suffered from numb arms dead arms went to go made me hold arms out in front chest height made me hold a book. Had a stroke 2 days later! Then started getting numb arms etc again went back to doc's sent to hospital. Sent home. .. second stroke a week later. All well and good getting checked out but no one can say for sure what's going to happen. Sorry not a positive post from me. I hope you get it checked out, and a better outcome than I did, wishing you the very best.

[HollyHeski Administrator in reply to molly1969]

How are your arms now, was it only prior to strokes?

[molly1969 in reply to HollyHeski]

I have never had it again. Was only pre strokes. Not that I want to scare you, was months before first stroke. It was waking me up in the night. I was doing windmills with my arms trying to get blood flowing. But was many factors not just numb dead arms. So can't say that was a factor towards my strokes. But that has been the only times iv suffered. There's so much about this illness I don't know about its maybe symptomatic? But I'm on medication now and never suffered since. I hope i haven't scared you not my intention. X

[HollyHeski Administrator in reply to molly1969]

Hi, no you havnt scared me, its probably your warning signal.

Ive had this for over 2 years now, only sleep 2-4 hours at a time before it wakes me. I have disc problem with my neck and waiting confirmation that it is a thoratic outlet prob.

Glad your doing ok now

[rayl]

No didn't scare me either could help with what triggered all this off for me last year 2 days befor I had massive brain swell ( not a stroke ) apparently I had been to see a chiropractor for my neck and shoulder pain had acupuncture and neck cracked in few places funny I alway said to them it was something to do with that ?? Just recently neck, shoulders and back been getting bad again I can say I won't be see a chiropractor lol x

[rayl]

Hi Lure2 answer to your question who do I see i have hemotolagest (sorry for spelling ) at my local hospital that has worked with Dr hughs Dr Cartwright she's very good uumm I also have been under neurologist/ gyney and hopefully see the rumatoalgist(sorry for spelling all these big word) in the next month or so anwers's are slowly coming x

[Lure2]

Hi,

There are TWO things we need when we have got a diagnose of HS/APS (we need a lot of other things also but these are the most important ones);

1. A Specialist who is SPECIALIZED in Autoimmun illnesses like HS/APS, Lupus, Sjögrens, Thyroidea etc. He is capable to give us the right treatment and distinguish between the other autoimmun illnesses which often "go hand in hand". They are a sort of "cousins".

2. A drug that will anticoagulate our very thick blood at an INR high enough (if we get Warfarin which has a very good effect on our illness) to make the symptoms we suffer from to disappear of at least get much better.

It is usually a Rheumatologist as it is a rheumatologic illness or an Hematologist as it is also a blood-disorder. The Neurologists we have found do not "get" that we have too thick blood that has to be thinned.

Kerstin

[HollyHeski Administrator]

And the 3rd is a bonus - all the support from our families, including our extended one here on this community.

[molly1969]

Good to know I haven't scared or scarred anyone. But I don't go for deep tissue massages it only exasperates the pain. A good cosy bath doesn't work miracles but does heal all achy bits x