Pins & Needles - Carpal Tunnel Syndrome

[Emma2]

I thought I would do a follow up on this - I had previously blogged about the pins and needles I have been suffering with each morning. I have now discovered that they think it is carpal tunnel syndrome. Apparently people with rheumatological conditions are more prone to it and my doctor suspects the raynauds attacks have damaged the nerve leading to carpal tunnel syndrome. I have to go and get some splints fitted to wear at night to keep my hands straight to try and stop it - I hope it works. I am sure my boyfriend will find it an attractive look in bed(!!!). Thankfully he is brilliant and very supportive. Both hands were terrible on Saturday morning - I couldn't turn my alarm off or pick my glasses up properly!! I am hoping it won't start to affect me during the day but I did notice it yesterday at the gym. I was on a cross-trainer and one of my hands was going numb whilst I was holding onto the arm of the machine. One of the previous replies on my blog came from someone who had also been diagnosed with carpal tunnel syndrome. I suspect this may be something quite common. I am feeling pretty hacked off by the whole thing. It just seems to be one thing after another!

[Anteater]

Hi Emma, may have been me. I have the same problem pins, needles and numbness and sometimes has affected my arm up to my elbow where I have woken up and it feels like a led weight and I have to shake it to get the feeling back - horrible ... They also thought I had Carpel Tunnel Syndrome but I had nerve tests when I was an inpatient and they came back normal - twice ... but my nerves are definately damaged by the Raynauds... I was also given splints to wear at night and they do help. I also get it during the day - thank god there is someone else out there that understands the feeling - its horrible. It does not get any better as you say you pick up then get knocked back by something else its so depressing sometimes xxx Oh, I am trying Botox in my hands now - watch this space !!!!!

[Emma2]

I'm really hoping that it affects me to a minimum during the day - I do not have a secretary and do all my own typing!! Plus I need my hands for everything else - the gym, my martial arts etc!! It's odd how you take things for granted - you don't think about things when they work properly!! Good luck with the Botox. Keep me posted.

[zenabb]

Thank you for your follow-up Emma2.

[Jeanette_Ish]

have just read your post and comments, i have found this to be really helpful i thought i was going out of my mind, i suffer numbness, pins & needles in hands and feet, feet being the worst, had test for nerve ends and came back clear, so told me there was nothing wrong, reading this like you said its one thing after another but nice to know i'm not going crazy.

[Emma2 in reply to Jeanette_Ish]

I bet we are all similar - the formal tests don't say anything is wrong but our symptoms show that something is wrong. It makes sense to me really - there has to be some consequence of these attacks and your hands being continually deprived of blood. This appears in various ways such as pins and needles due to nerve damage, ulcers etc. I am very lucky with my doctor and my hospital as they are never dismissive of things I tell them. It is awful if you are told that nothing is wrong when you know yourself that there is. None of you are mad!!!

[Jeanette_Ish]

IThanks for reply, I to have ulcers on feet and hands but as fast as i clear them they are back, feet never seem to clear for long battle all the time, I have now started with them on my scalp and hair coming out in hand fulls.

[Emma2 in reply to Jeanette_Ish]

That must be really upsetting - how awful for you. I haven't had any ulcers yet so I really need to consider myself lucky. How are you coping with everything?

[Hidden]

I had all these symptoms while trying to sleep at night. I had to dangle my hands out of the bed and felt like i had dipped them in boiling water. I went to my gp and he ordered lots of blood tests. I was diagnosed with limited scleroderma and raynaulds. My fingers get stiff,sore and swell as well.

[Jeanette_Ish]

hi emma2 it does get you down, but joining here opens your eyes to what you go through & although indivdual in many ways, some things are so similar i realised i was not mentally disturbed as some would have you belive, i was on more antidpressents and told it was all in my mind, even my own doctor missed sign's and even a referal to a consultant because they didn't take it serious, best part of being on here is the fact my depression is because i can't do the things i took for granted, and knowing there is a medical condition as bad as it might be just knowing whats wrong is a blessing itself, just need further info on it to live a normal life as possible, dreading the winter but glad got support from here

[Emma2 in reply to Jeanette_Ish]

Let's hope this winter is not as cold as the last two! I have been wearing my splints - they made no difference at all on the first two nights and I woke up with my hands just as bad and struggling to take the splints off!! Numb hands and velcro do not mix! Anyway, they have been a bit better over the last few nights which is good. I have some numbness creeping in during the day a bit now - I got it whilst driving the other day and sometimes holding my electric toothbrush sets it off. It must be the vibration. I just have to take each day as it comes - I am not loving the look of the splints though!! When I went to have them fitted I almost handed them back and asked if they had something in black!! Oh well - good job I have a sense of humour!!

[Jeanette_Ish]

so glad to hear its alittle better, having no feeling and velcro, i'm sure they don't realise the problems we encounter, i hate doing my garden something i loved before the vibration of the tools like hedge clippers and lawn mower i end up in agony trying to get people to help is a nightmare to do garden, wish i could get it flagged and just have pots to manage, will mention this next time at hospital. good luck with splints

[Emma2 in reply to Jeanette_Ish]

I'm quite stubborn as well - I feel so undignified wearing the splints that I wouldn't ask my partner to help me. He is quite happy to help me but I thought I might feel a bit humiliated if I couldn't even take them off! It sounds as though you need Alan Titchmarsh to sort your garden out. I am not a gardener but don't think I could do it if I wanted to really. The combination of the raynauds and carpal tunnel syndrome make tasks outside really difficult. Thank god I can still lift weights in the gym! I have noticed that I seem to drop things quite a bit now though - usually when my hands are actually normal!!

[Jensue]

I've had carpal tunnel in both hands and did nothing about it so ended up with muscle atrophy in my hands so they are much weaker now. My rheumy sent me for test after telling him about the numbness & pins & needles at night especially in certain fingers which spread to my whole hands. My tests came back positive & he said it was due to the fibrosis caused by the SSc (I have limited) so then had to have both hands operated on to release the nerves, I'm glad I did now because it is so much better. I still get some pis & needles but then like others have said that it is more to do with the Raynaud's & swelling I get.

[Emma2 in reply to Jensue]

Thanks for your post Jensue - hopefully I won't have to have any operations. I will play it by ear and see how things go.

[adele69]

Hi i am having carpel tunnel release surgery next week, on my right hand. hope it cures it. also i have been diagnosed with raynauds. Its taken the doctors, ect over 2 years to find out what was wrong. i didnt know they could be connected.

[Emma2 in reply to adele69]

Good luck with the surgery. I have been lucky in that my carpal tunnel symptoms seem to have disappeared for now. Perhaps the wrist supports I was wearing at night cured it?? Who can say??!! I do think the two conditions can be connected - everyone is affected so differently by raynauds and/or scleroderma that you have to deal with things as they arise. I don't think any two cases are the same.

[Whistler81]

I had CTS early this year for no obvious reason. The increasing pins and needles (both hands) was infuriating. NHS confirmed severe CTS requiring urgent decompression to avoid irreversible nerve damage in finger tips. Estimated operation date (fast track) was at least 6 months. Against all my principles I went private … and saw me that week! Completely resolved … it was heaven being able to sleep undisturbed … worth every penny.

However, in the following weeks of wound recovery I noticed my fingers swelling particularly in the mornings. This has developed into classic sausage fingers and now toes. One theory (Rheumatologist) is that the CTS was a symptom of scleroderma. My problem is that one definitive test (Scl-70) remains negative. So in spite of many symptoms of scleroderma the clinicians are reluctant to treat (methotrexate) in case it causes further problems.