tingling

Hi there - does anyone ever experience tingling/pins and needles in their knees, legs, forearms, feet? I have it now and I feel a bit crazy and I'm trying to ignore it. I know anxiety can cause this but also a number of serious autoimmune diseases. I'm so confused. thanks, giselle

Giselle:

Yes, I have it. I was diagnosed with Lupus-related neuropathy, although it seems to come and go with Lupus flares. Sometimes spinal discs can cause it, and I also have it in my arms sometimes because of that, especially when I'm stressed. Usually if it's a disc problem, it will be confined to the upper or lower areas, not both.

Best to get it checked out.

thanks Sandi. It feels like strange thing to see the doctor about but I've made an appointment. Trouble is I'm out of town right now.

It's not a strange thing at all to see the doctor about! It can be serious depending on what it is. When is your appointment?

I have that too. I'm going to the neurologist on Thursday. I'm noticing the tingling creeping up my legs closer to my knees. I've had sharp enough pains in my legs to wake me up at night. I've also been having muscle/joint pain in my collar bone/shoulder area that is working down my arm now. Ugh.

I go next tuesday. I didn't want to go back because I was just there. My tests for lupus (or whatever) were all good except for the ANA and anti-ro so I don't understand what's going on. It's not painful at all but scary.

Giselle - a person can have Lupus symptoms long before labs show it. Symptoms are part of the diagnostic criteria.

You might not have or ever develop Lupus, but it can't be ruled out when some of the criteria are met.

I'm glad you're both going soon!

thanks Sandi. At this point I'm hoping that's what it is just to end the mystery. I guess that would mean I'd start some kind of med though (plaquenil?) if they think it's lupus. Do flares go away on their own?

Giselle I'm curious - did those symptoms show up all at once or gradually [like did one area start first and after a while - days/weeks/months - did it "spread"?

Gretchen, same with you?

There is no reason to feel silly going to a doctor about symptoms that are new!! One should feel silly for NOT having something new checked out

I have neuropathy - just dumb luck I have it, it's idiopathic [go figure]. 24/7 the tingling, lightening strikes, feeling like walking on burning hot sand and more.

Good luck you two!

totally a new thing for me. started a week ago in the middle of the night when I got up to feed the baby and it just hasn't left. I have some kind of cold/sore throat which is making me feel overall unwell.

melinda - is it really prominant or just in the 'background' for you?

I'd say they were kinda gradual but I've had them so long I don't remember anymore. More than a year. I remember about a year and a half ago I had severe pain in both of my heels, thought it was heel spurs but it just went away, I guess that's when I noticed the tingling/pain in my feel and legs. I was thinking it may be because I am a little over-weight and I spend a minimum of 4 hours a day on my feet. But it is getting progressivly worse. And it's much worse in my left foot/leg than my right.

Mine started one day out of the blue too. I got in the shower one morning and as soon as the water hit my legs, I got pins and needles that felt like bee stings from feet to mid-thigh. It lasted about 8 weeks and slowly got better. I still get it at times for short periods and also have strange sensations like bugs running under the skin, etc. My feet burn all the time and are a bit numb. I get it in hands and arms at times too.

Giselle mine started gradually, in both feet - I let it go for a while thinking it would go away. The MD sent me for tests to make sure my circulation was ok - it was so she sent me to a neurologist.

I really wish mine was in the background but it isn't - there are times I want to gnaw my legs off at the knee. So far my hands/fingers are just tingly, I feel it but it's not driving me crazy. Acupuncture has given me some feeling back in my feet and I feel it is what has kept my hands/fingers from getting worse.

I don't have lupus - my PN can't be tied to anything, physical or medication-wise.

I'll be interested to find out what your doctor says.

Gretchen I wonder if the severe pain in your heels was plantar fasciitis? It can go away. I'll be interested to find out what your doctor says too!

Sandi - I was hoping yours was gone now.

I went to a walk-in clinic last night and he did a quick neuro exam and everything was fine so that's reassuring. Still don't know why I feel this though but at least I can wait until next week when I'm home to see my family doc and go from there.

sandi - is this a 'recognized' symptom of lupus or RA?

From the Cure4Lupus.com site
cure4lupus.org/store/index.php?main_page=page&id=156&chapter=1#Peripheral_Neuropathy
◦Peripheral Neuropathy
■ A symptom most commonly associated with Diabetes, this can also be caused by Lupus. Peripheral nerves are the nerves located in your face, arms, legs and torso. When these nerves do not communicate properly with the spinal cord it is called peripheral neuropathy. This can cause pain, numbness, tingling, burning or itching.

The Lupus Fopundation of America
www.lupus.org/webmodules/webarticlesnet/templates/new_learnaffects.aspx?articleid=2323&zoneid=526
The nerves of your peripheral nervous system control your motor responses and sensation, so symptoms of numbness or tingling, or inability to move a part of your body, may be the result of lupus affecting these nerves. Known as peripheral neuropathies, symptoms of PNS nerve damage are caused by inflammation of the nerves or by compression of the nerves due to swelling in the tissue around them


What I find frustrating is peripheral neuropathy is almost always associated with diabetes - no I do not have diabetes, I have to say that a lot. Diabetics make up a small percentage of those with PN but they are the most recognized.

I'm glad you went to a clinic and the neuro exam was fine - when you see your doctor at home you might ask for a re-evaluation, also I had more blood drawn than one could imagine for almost every test in the book, but before being sent to my fantastic neurologist I was given 2 tests to check the circulation in my legs and feet. Once I did see the neurologist I was in his office a long time, it wasn't a quick neuro exam.

Giselle - you need more testing than that. I check out fine too with a quick neurological exam. You need an EMG to start. It might be normal though unless nerve damage has occurred. That can take some time.

Yes, it is a recognized symptom, as Melinda posted. I did see a Rheumatologist though who told me it was not a Lupus symptom. Actually, nearly everything under the sun can be a Lupus symptom. Anyway, she told me that I probably had MS or Transverse Myelitis and walked out of the room. I sat there stunned. That was the last time I went to her. She had very bad manners.

Melinda - no, it's not gone. It is tolerable though most of the time. It slowly gets worse as far as the burning and numbness, but it's a very slow progression.

Sandi wrote: I check out fine too with a quick neurological exam. You need an EMG to start.

And I do not do fine with a quick neruological exam - close my eyes, have the doctor stick a pin somewhere in my foot and I don't feel a stick, pressure maybe but not a stick. Forget the feather or the q-tip, don't feel it.

That's why I said she should as for a re-evaluation when she gets home & is with her normal doctor.

At the beginning though, there is more feeling than after it progresses.

thanks ladies. We'll see what my dr says next week and go from there.

Let us know! I wish you the best.

Hi,
I have what my doctor calls parathesias. They are tingling spots that can be anywhere on my body, sometimes burning sometimes not. It also can feel like there are bugs crawling under my skin, really weird sensations that drive me nuts. I first had them when I had hemolytic anemia which is an autoimmune disorder where I made antibodies to my red blood cells. That went into remission after a splenectomy in 2000. In 2005 I started having them again and then was diagnosed with ITP.
They went away when I went into remission from ITP in 2007 and now again have started since my ITP relapsed a month ago.
My hematologist sent me to a good rhuematologist and neurologist where I was evaluated for lupus, MS, anything else they could think of. Everything was negative there. My hematologist said that for me, the parathesias are associated with ITP.

What do you normally treat ITP with? I'm asking because maybe the drugs are helping the parathesias and not the higher counts. Immunosuppressants can make a difference with that depending on the cause (which can be immune-related).

I have more of the parathesias than actual neuropathy...constantly have burning skin and the bugs crawling. The neuropathy (bee stings, sleet pelts) occur more during the winter months when it's cold or when I've been out in the sun.

whew! Been without internet for 2 days now. State wide problem with Frontier/Verizon. Glad it's all better now!
I went for appt with neurologist. He's thinking 1 of 2 things. Tarsal Tunnel Syndrome or Peripheral Neuropathy. He didn't pick one yet because I have to have a whole bunch of blood work done! Something new! LOL. And he's a little confused about my symptoms. It appears that my reflexes are ok but my sensory is not. I dunno. I haven't had time to research any of it. It's kinda aggravating. I don't think I'll have time to do any research until Sunday! When he poked the little needle thingy in my legs I didn't feel any of it until my knees! I dunno. I go again next Thursday for an EGM, I think that's what he called it. Something about sticking a needle in my leg with an electric shock to see how stuff reacts. Again...I dunno! Research....research.....research!

EMG. I've had many of them. They don't hurt, just feel weird. Did you realize that you had loss of feeling?

I have Cubital Tunnel in my arms, plus the on and off neuropathy and parathesias.

Sorry to hear about all of this, Gretchen. Keep me updated.

For me, the steroids, even at the initial high dose, used to treat my ITP do nothing for the parathesias. I have been having them constantly since May when I started noticing bruising and went to the hema. After being treated with Rituxan and going in to full remission, platelet counts above 300,000 for 4 1/2 years, the parathesias stopped. They really drive me crazy!

Well that's a real medical puzzle for sure. I'll have to do some research about that later.

The verdict is in! I have Tarsal Tunnel Syndrome AND Peripheral Neuropathy. Woo Hoo! :huh: I haven't had a chance to look at all the blood work that was done, it's been a busy day and it's not over yet! He said it all looked good though. And the Neuropathy is not caused by diabeties. Whew, that's a relief...I think! I guess that means it's another "idopathic" thing. :dry: He wanted to give me Neurontin but I said no. I can't afford to gain anymore weight and that is a side effect of it. So, it's Cymbalta for now.
How am I possible going to continue as a waitress with this?

I tried Cymbalta - wicked. I hope you have better luck. What dose?

Sorry about the diagnoses. Gretchen, I wish I had advice about how to continue working. I am in the same boat. I can't tell you how many times I have been to the point that I can't keep doing it. The problems keep piling on. I should know this, but have you seen a Rheumatologist lately?

Ok, after some research it does appear that everything is "ok". My sed rate is high again though. Not sure what that means, but I will be asking....again. This is the 3rd time its been elevated. The ANA test only came back as negative. I thought there was some sort of number like 26:1 (only an example). Maybe I'm thinking of something else.
I'm on 60mg Cymbalta a day. If you don't mind me asking Sandi, what made it hard for you to tollerate?
I've never seen a Rheumatologist. Should I be considering it?

I started on 60 mg's and the next day I was a zombie. All I could do was sit on the couch and stare. I always start new meds on the weekends in case of side effects like that, so it was a Saturday. There was no way I could have functioned at work - I could barely have a conversation. That was it for that drug.

Yes, I think you should see a Rheumatologist. When was the ANA done?