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Discussion Starter · #1 ·
Hi everyone!

I was finally diagnosed with SLE a week before Xmas and my 40th Birthday!This site is brilliant and very helpful! I thought I'd finally ask if anyone else gets the same problem!

Last night was the worst time I woke in a panic with a hand that felt as though it did not belong to me (deadlike not that I know what that feels like!). After a while, and lots of massage the feeling returned to tingling.
I do get tingly/pins and needles quite a lot but this was worse and made me panic!

I do not see my Immunologist until end of March (scheduled this appointment before I got the DX).

Bye for now!:hehe:
 

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Hi Greenhaggis,
I had the same symtoms and it was diagnosed as Carpal Tunnel Syndrome. I had it in both hands and have just had carpal tunnel decompression surgery. Not all cases require surgery. See your doctor for advise. Good luck.

Lainey
 

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I have only just 'discovered' lupus so I know very little. But I have had problems with my hands for years. Keep in mind that if you are worrying because of your diagnosis, anxiety could be exaserbating the problem. (I know all about anxiety and panic!:lol:) If you hyperventilate (over breath) you will get pins and needles in your hands you can even get a type of cramp which makes your hand/s go into a ridgid claw like position. It is all very frightening but it can't harm you and will stop as soon as you start breathing properly again. (breath into a paper bag or take deep breaths in through your nose and exhale slowly through your mouth. Take twice as long to breath out as you do to breath in, ie, in for 3 counts out for 6. Unlike some breathing exercises you can do this for hours if you like!)
Sorry I don't know enough about lupus to help with that but hope I helped a little.
Best of luck.
 

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Hi Greenhaggis

I have to agree with Lainey. It does sound like it could possibly be Carpal Tunnel Syndrome. I also have it in my left arm and am currently getting physio and wearing wrist splints which have helped enormously.

Here is a link about Carpal Tunnel. Have a look at it and see if it is familiar. It can be common in inflammatory conditions like Lupus.

http://www.ninds.nih.gov/disorders/carpal_tunnel/detail_carpal_tunnel.htm#102483049

Definitely mention it to your doctor and start keeping a diary of how you are affected, what it feels like, if there are particular fingers that are affected, the time of day it happens, etc. That kind of information will help your doctor.

Best of luck!
Joan:rose:
 

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Hi Greenhaggis,

I get "dead" hands every night. In my case it is also quite painful (they feel like they're about to explode) and that's what wakes me up. It doesn't panic me because, as I say, it happens every night.

For me this is caused by peripheral neuropathy. I also get it in my feet and legs (though the hands are mainly at night and the feet and legs all the time). The feet are more a lack of sensation, almost like wearing wet socks and are less painful than the hands waking me at night.

You need to mention it to your GP and rheumy next time you see them. If you suffer from lots of neuropathy ypu may be referred to a neurologist to do further examination (EMG, MRI..).

Katharine
 

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Discussion Starter · #6 ·
THANKS SO FAR EVERYONE, all info is a great help or even just a reminder of what I have aldready been tested for, but forgotton!
RE: Carpal Tunnel Syndrome - GP sent for an electro diagnostic test about 6 years ago for tingling this tested okay! Perhaps its time for another one.
I do wake-up with hot swollen stiff hands quite often too, but this is not the problem! My hand/s are a dead weight, numb and lifeless, cold, floppy- I seem to have no brain control over getting them to work. My husband can feel the dead weight and floppyness when he rubs them for me. It seems only the rubbing/stimulating that gets them back to life.
Will make an appointment with my GP next week once I have got all my kids back to school.

Thanks again, Lesley
 

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Hi Lesley

Just another thought. Have you had your B12 levels checked? Many of us here have B12 deficiency (it was the very first blood problem that was picked up with me). There are a number of symptoms including numbness or tingling in the hands or feet. Your GP can easily run a blood test for this and the treatment is very manageable by your GP. In some cases a course of injections is enough to bring the levels back up and ongoing monitoring to ensure they stay in the safe range. In other case, like myself, you will need regular B12 injections every three months or so for life.

Here are a couple of links which you might find useful.

http://www.webmd.com/a-to-z-guides/vitamin-b12-deficiency-anemia-topic-overview

http://www.nhsdirect.nhs.uk/articles/article.aspx?articleId=42

Best of luck and let us know how you get on

Take care
Joan:rose:
 

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Discussion Starter · #8 ·
Joan,

I will ask GP whether I have been tested with my last bloods and if not request the test! Thanks!

Lesley
 

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My doctor calls it "periferal neuralgia". It was actually rather funny that, after the blood tests came back, he asked me about pins-and-needles before I mentioned it. I thought he was a mind reader! Some visits later when the tinglies were worse it occurred to me to ask if there was anything I could take for it. His gentle, loving charitable answer was a shrug and a comment like, "Learn to live with it." In fact, distressing though it can seem, it is a lot better than *pain*.
All the best,
Douglas+
 

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Hi,
Just remembering mystery diaognois the other night. This woman had pain in her thumbs,and went to the doctor. The doc told her she had carpral tunnel. Then she got swollen ankles and feet. She saw a Rhematoligist. He sent her for blood work and every test possible, she was diagnoised with raynauds. Her hands became stiff and fingers to a crooked almost closed look. She was aging rapidly. Once diagnoised with proper meds it was under control.
Just thought i would ad my 2 cents...... florie
 

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hi there, just saw u were in the chat room and i tried to get in but it told me i needed to download java, i did this but still cant seem to get in grr, any ideas ?
thanks carol5
 

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Hi,

Was reading your post and answers to it. All answers are a the possible reason. I have the same thing but it is caused by my ulnar nerve. A neuro can do a test to rule this out.

I wish there was just one test that would give us all the answers.

best of luck
elaine
 

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Discussion Starter · #13 ·
Hi Elaine,

I'm grateful for any suggestions.

I have just asked my GP whether its time to see a Neurologist and she agreed! I'm seeing my Immunologist in a few weeks so will ask him to refer and if he wont my GP will (GPs referal will take longer).

Take care,

Lesley
 
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