Numbness/pins and needles

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acquiesce
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Date Joined Jan 2014
Total Posts : 360
   Posted 5/2/2014 5:50 AM (GMT -6)   
Hello everyone, I hope you are having a somewhat stress free and symptom free day :)

I have a question about numbness, my hands are getting increasingly numb, especially after bending my arm. Yesterday just holding my purse strap on my shoulder for a few minutes caused me to lose all the feeling in my right hand. I also get that pins and needles feeling. I wake up with both hands that way every morning now too. If I sit for a short while in the same position my behind goes numb as well as my feet. Even if I put my feet up.

I've been having neck pain and shooting pains in my head and up my nostril which is so weird too. It only lasts a few seconds but it's intense. Like someone stuck a needle in me really hard. I literally stop what I'm doing when it happens and think what the heck was that?!

I'm going to see my primary doc next week. I just wondered if anyone has experienced this and is it a lupus thing? My circulation is bad but it's never been this bad before. I also have asthma but it hasn't been acting up so I think I'm ok there.

Any help would be much appreciated!

Joie

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/2/2014 9:04 AM (GMT -6)   
It sounds like your nervous system is flaring.
I heard that lupus can affect anything in your body.
I hope you get better soon.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

oreo11
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Date Joined Feb 2011
Total Posts : 399
   Posted 5/2/2014 1:40 PM (GMT -6)   
Hi Joie,

Before I got diagnosed I had a lot of those symptoms. Especially in my hands and arms. It got so bad that when I was in exercise class and on my back that my feet would go numb when I put them in the air. I was working for a landscaper at the time and it got to the point where I could not even hold on to the lawn mower or hold a paint brush. I still have those issues from time to time, but not nearly as bad as in the beginning. I think the meds (Prednisone) helps.

What is driving me crazy right now is my right foot and right calf. There are times when I get up in the morning that it feels like someone lit a match under my foot. The pain is so intense! I get relief from stretching and walking, although this morning on my walk the pain intensified and involved my calf as well. An MRI last year showed severe collapse in my sacral-iliac vertebra with impingement on the nerve and stenosis. The back issue is worsening, especially as the osteoarthritis gets worse. And the Lupus certainly does not help.

I hope you get some answers from your doc. Hang in there!!

Laura

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 5/3/2014 5:33 AM (GMT -6)   
Thanks Joy and Laura :)

I'm hoping my doctor will send me for an mri. I thought that my rheumy would just to check on all the problem areas that don't seem to go away. It's hard to know which doctor to go to. I'm afraid they might shuffle me back and forth.

I'm dropping things like mad and it's as though my hand just let's go and my brain doesn't know it. It does sound like a nerve thing. Yesterday I felt like something was biting me like a bug all over.

Laura I hope you get some relief! I have osteoarthritis too. I was under the impression that it doesn't do the damage that other arthritis does. Yeesh, there is so much to learn about all this stuff.
UCTD , livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Plaquenil, celebrex, advair, flovent, dovobet, vitamin A,B,C,D,E fghijklmnop ;)

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

oreo11
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Date Joined Feb 2011
Total Posts : 399
   Posted 5/5/2014 7:49 PM (GMT -6)   
Hi Joie,

Same with me. I had no idea that I could get that kind of damage, but the Rheumy did say that it can happen. Crazy and not so much fun. Hopefully, you will get a treatment plan after the results of the MRI have come in.

Laura

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 5/6/2014 11:08 AM (GMT -6)   
Thanks Laura, so I just saw my primary this morning and she said it sounds like I have nerve damage and I need to see the rheumy for that and get a EMG or something. Aaaaarrrggghhhhhhhh!!!!

I swear, between the primary and rheumy I keep getting passed back and forth with no help. I had a feeling this would happen. I'm so frustrated right now. My next appointment with the rheumy is in June. It's not like I can just call her up and get in there. Grrrrrr.

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 5/6/2014 11:40 AM (GMT -6)   
Okay I just looked up what an EMG is. Nevermind. I can wait!
UCTD , livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Plaquenil, celebrex, advair, flovent, dovobet, vitamin A,B,C,D,E fghijklmnop ;)

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

Lynnwood
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Date Joined May 2005
Total Posts : 7723
   Posted 5/6/2014 12:00 PM (GMT -6)   
As far as I know, rheumies don't really do EMG's - neurologists do. MAybe you can call your rheumies office and see if you can get the test done before your appt? I think with nerves if you wait too long there can be permanent damage. Lupus inflammation can cause those feelings - I remember prednisone helping me when I started getting some.

Sorry, feel like I just raised more questions than answers.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 5/6/2014 12:36 PM (GMT -6)   
Thanks Lynnwood. Yes, my doctor said the rheumy could get me in quicker to get one as far as she knew. I didn't get the impression that it would be done by the rheumy. But who knows. I don't know a whole lot right now about anything!

I should call but I'm too discouraged at the moment. My primary also roped me into a complete physical and pap in two weeks. I feel like I live at drs offices. Constantly calling and following up and yadda yadda. Such a pain in the butt.

Not to worry, I'm full of questions and no answers so you've haven't added to that any.

Sorry for the vent. I am just sick of sick and one thing after another. Some direct answers and an easy process would be so welcome right now. Healthcare, more specifically Canadian healthcare is an exercise in futility at the best of times.

Wow. I am in a foul mood. Sorry :(
UCTD , livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Plaquenil, celebrex, advair, flovent, dovobet, vitamin A,B,C,D,E fghijklmnop ;)

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

jan1952
Regular Member


Date Joined Mar 2014
Total Posts : 357
   Posted 5/6/2014 4:07 PM (GMT -6)   
Hello Joie--

So sorry to hear about your situation(s)! I had an EMG years ago--not fun at all, but I've had worse procedures. I believe my neurologist requested the test. (foggy memory)

No need to be sorry about being in a foul mood--you've earned it, eh?

Thinking about you and wishing an answer for you very soon.

Jan
"If there are no dogs in Heaven, then when I die I want to go where they went."
Will Rogers

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 5/6/2014 7:58 PM (GMT -6)   
Hi Joie,

Foul moods are okay. We need to be able to vent and move those feelings in through and out of our bodies. Like Lynnwood, a neurologist performed my EMG and the Prednisone did work. It still helps, although at the lower dose, I still have occasional problems. Please call the doctor when you are less discouraged. I think it's important to be seen sooner than later.

Laura

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 5/6/2014 9:02 PM (GMT -6)   
My rheumy referred me to an orthopedic doc for shoulder and arm pain with weakness. I know what you mean about dropping things and shooting pains, though mine were mostly in my arms and hands. Saw the ortho today and apparently my shoulder is fine, but he suspects a disc problem in my neck that is the source of the problem. Having an MRI next week to confirm. Apparently the big clue is the numbness/tingling/dropping things. He did some positional tests in the office and ordered digital xrays today. No mention of EMG, but I have had one in the past for leg numbness and it's really not as bad as it sounds.

Good luck to you - hope you get it figured out soon! Nerve damage can occur and become permanent.

Lucy

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 5/7/2014 4:55 AM (GMT -6)   
Thank you dear ladies for your comments and kindness. I will call today as I'm in a slightly less persnickety mood. I realized once I made my comment that I have full blown pms and am seriously snarky as a result. My patience level is at negative 4 lol. If I get the run around from the rheumy's office I may lose my temper.

It's not nice to be afraid of what might be happening and then feel as though I'm being volleyed back and forth. I dislike having to call the doctor, I feel like a nuisance. I think it's a side effect of having not very nice doctors in the past. I'm sure some of you can relate unfortunately.

I've had worse procedures too, two surgeries within a year, so I'll survive. It just would be so nice to go to the doctor and hear, "you're doing great!" for a change! It's been a lifetime of one thing after another.

Ok, pity party over. I will call the rheumy from work when they open and get 'er done.

Good luck to you too Lucy, I hope you get some answers soon as well :)

Laura, I hope your leg and foot pain is easing today.

Lynnwood, I hope your flare is finally calming down.

Jan, I hope you get to enjoy a walk with your doggy today :)

I'm so grateful to have found the lot of you and this site xo

Joie
UCTD , livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Plaquenil, celebrex, advair, flovent, dovobet, vitamin A,B,C,D,E fghijklmnop ;)

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

jan1952
Regular Member


Date Joined Mar 2014
Total Posts : 357
   Posted 5/7/2014 7:30 AM (GMT -6)   
Good memory, Joie! I wish I had time to walk with Ginger Snap today, but she'll be going for a car ride instead. We're leaving for Boulder CO for my daughter's wedding and will be gone five days. I'm already exhausted, and we haven't even left.

Took me three days just to clean the house because a critter sitter is staying over--to take care of the rest of our brood. Otherwise, the house cleaning would not have been done! :)

Yesterday, I finally got my first appt with a rheumatologist--on May 28. Thank goodness. (He's in Billings MT, just 150 miles north. A stone's throw compared to what Laura had to drive!)

Take care, and I'll be checking the site to see how you're doing.

Jan
"If there are no dogs in Heaven, then when I die I want to go where they went."
Will Rogers

Queen_Ghost
New Member


Date Joined Apr 2014
Total Posts : 16
   Posted 5/7/2014 6:47 PM (GMT -6)   
acquiesce said...
Okay I just looked up what an EMG is. Nevermind. I can wait!


I had an EMG done several years ago, back when I thought my numbness/weakness/tingling in my legs was related to a demyelinating disease called Charcot Marie Tooth. It was abnormal, and the neurologist diagnosed CMT based on family history. That was, of course, before my current lupus-like symptoms began, so my positive ANA wasn't investigated further.

And I'll probably have to do another one soon, since it's been over ten years since the last and they are investigating lupus.

I can tell you that the EMG is the most painful test I've ever experienced. But...I'll gladly do it again if it helps my doctors find out what's wrong. A few minutes of pain is worth it, if the risk of NOT knowing might be worse.

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 5/8/2014 4:59 AM (GMT -6)   
Jan, congratulations on your daughter's upcoming wedding :) I hope you enjoy your days away. Also, good luck with the rheumy appt, you'll have to let us know how it goes.

Queen_Ghost, I agree that if the test has to be done then it's got to be done. I hope you get some answers soon too.

I called the rheumy's office yesterday and told the receptionist what my primary said. She talked to my rheumy and called me back within a few hrs saying that yes I need the EMG as soon as possible and they were trying to book one for me at one of our hospitals. So, I should get a call in the next few days. I got myself all worked up thinking they would shuffle me back to the primary and they didn't. That's a relief even if I feel rather silly. I've got a sore in my mouth now and feel a flare coming on. What a dolt.
UCTD , livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Plaquenil, celebrex, advair, flovent, dovobet, vitamin A,B,C,D,E fghijklmnop ;)

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 5/8/2014 5:04 AM (GMT -6)   
Oh and Jan, yes my memory and brain fog have been improving with the plaquenil. I'm two months in now and starting to see it's benefits. My word slurring was really diminished until I got myself all stressed over this EMG the last couple of days. At work yesterday I kept pronouncing words wrong again and was thinking "oh no". But at least now I know I can feel better again. :)
UCTD , livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Plaquenil, celebrex, advair, flovent, dovobet, vitamin A,B,C,D,E fghijklmnop ;)

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

jan1952
Regular Member


Date Joined Mar 2014
Total Posts : 357
   Posted 5/12/2014 11:15 AM (GMT -6)   
Joie, I thought about you as we were driving to Boulder. about 4 hours into the drive, my feet became numb and tingly--and that feeling spread up through my legs. I thought I was going to crawl out of my skin!

Good thing my husband was driving so I could get in the back seat and elevate my legs, stretch them, and rub my feet...not that that helped much! It went away when we got out of the vehicle at 6.5 hours.

And yep, it happened on the way home, too. BUT, the wedding was wonderful! And, today, I'm taking it easy, haven't even gotten out of bed yet...

Do you have an appt for your EMG? I looked up peripheral neuropathy, and the description seemed to fit?

Jan

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 5/12/2014 6:08 PM (GMT -6)   
It's not a nice feeling at all. I will look up peripheral neuropathy, thanks. I hope your symptoms were just from the long drive and don't give you any more trouble. I'm glad the wedding was wonderful. Congratulations!

I got the call today. EMG is scheduled for the 26th. A girlfriend of mine has offered to go with me for support. She is like a sister to me and having her there will make it easier :)
UCTD , livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Plaquenil, celebrex, advair, flovent, dovobet, vitamin A,B,C,D,E fghijklmnop ;)

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 5/12/2014 8:25 PM (GMT -6)   
Yup, stress will still make those slurring words symptoms come back!

I didn't find the EMG tests that painful .. but we all have different levels of pain tolerance. Hope yours goes well and produces helpful results.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 5/14/2014 5:21 AM (GMT -6)   
Thanks Lynnwood, I go for acupuncture and have a pretty good pain tolerance so I'm hoping it won't be so bad. I'm determined to stick it out (pun intended!) regardless.

That stress gets me every time! I really am bothered when I can't speak properly. It makes me feel so dumb. Everyone else around me understands and says it isn't a big deal, but for me it's upsetting and just compounds the problem!
UCTD , livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Plaquenil, celebrex, advair, flovent, dovobet, vitamin A,B,C,D,E fghijklmnop ;)

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

Lynnwood
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Date Joined May 2005
Total Posts : 7723
   Posted 5/14/2014 8:25 AM (GMT -6)   
In a way I don't mind the slurring (mine isn't that bad & goes away quickly) -- it reminds me to slow down, "peace out", eat better, sleep/rest more, take meds as instructed, etc. Plus it shows others that the "invisible disease" I claim to have (do have!) really does exist.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

jan1952
Regular Member


Date Joined Mar 2014
Total Posts : 357
   Posted 5/14/2014 3:52 PM (GMT -6)   
So glad you have an appt and that it's relatively soon! Hooray that your girlfriend is able to accompany you as well. Sometimes there's simply no substitute for a female friend.

My bet is that your great attitude and pain tolerance overcome the jitters of the test. I have faith in you.

Speech "impediments"...I'm a member of that club. This winter, one of my best dyslexic blurbs was "show snovel" instead of snow shovel. :) Other times, my flash cards don't flip fast enough, and I cannot find the words I want--or the wrong ones come out, and I feel silly, especially when it happens around people I don't really know.

Hope your numbness/pins and needles is less frequent than it was, Joie. Lots of us are rooting for you!

Jan

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 5/15/2014 5:39 AM (GMT -6)   
True Lynnwood, my body has been telling me to "chillax" for some time now. I worked 60 hrs last week with Mother's day and I have done myself in. I'm so stubborn that I have these rebellions against my current limitations and pretend I am like I used to be. And here I am advising others to take it easy, ha! Do as I say, not as I do! :P

I totally blanked out a few times at the computer, couldn't remember how to enter in an order. Made up a few words for the urban dictionary that made no sense at all and had to go to the office and try to stop the pain all over from knocking me down to tears. This is when my co workers/boss see my "invisible disease" too.

Thanks Jan, I'm determined to see it through and stubborn enough to do it lol. I switch the first letters of words alot too. I'd love to say the numbness etc is better but it seems to be getting worse. But, I got in quick for the emg so that's good. :)
UCTD , livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Plaquenil, celebrex, advair, flovent, dovobet, vitamin A,B,C,D,E fghijklmnop ;)

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 5/15/2014 8:32 PM (GMT -6)   
It's funny how we do that. The end of the school year is always a rollercoaster ride. I worked 10 hours yesterday and I am certainly feel it today. I can relate to what you said about do as I say, but not as I do. That is a popular mantra of mine. The problem is that it takes my body breaking down before I slow down....not always....but I think I am trying to prove to myself that I can still do it. Sorry to hear that the numbness is getting worse. The pins and needles, with subsequent burning pain I get in my right foot comes and goes. I notice that certain types of physical activity will make it flare up. Hang in there!!!

Laura
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