Dear Sjogies:
The reason I've been obsessing over Peripheral Neuropathy lately is that I've been noticing my fingers tingling and my arms, forearms, aching at night.
Of course my feet are numb and I have a terrible time walking and balancing because of the PN in my legs and feet.
I know what this probably means.
I MUST get help with this.
I am trying to get an appointment with a neurologist here, but he requires a referral and that is taking time.
Please tell me I have some time, and that I will get the help I need.
I am rather worried about how quickly this seems to be progressing. I had hoped that coming at such an advanced age, it wouldn't really have time to progress.
HA!!
Looking for reassurance.
Carolina
Carolina
I complainedfor months about my hands and arms going numb ,, fingertips feeling like they are smashed,, arms burning, andit progressed quickly for some reason,, I dont know what can be done for me now,, I thinkits pretty permanent. I hope you find some help,,, al I got was the run around from all of my so called (ologists)
Hi carolina :)
I spent more than a year waking every day with tingling feeling right up to the elbows and numb hands. They always sorted out once I was up and moving though. In my case - I believe it was low levels of Vitamin D because once I got tested and put on a supplement the arm/hand thing has been considerably better. I still have numb toes but so far it hasn't gone further.
Take care - Scottie :)
My rheumatologist and neurologist say there is little that can be done about PN associated with Sjogren's. It is progressive. The symptoms can be alleviated somewhat with Lyrica, Cymbalta, or Neurontin, but that's it. Catching it sooner rather than later does not make a difference. It may progress slower or faster with some folks, that is individual.
On Tuesday we went over my meds and decided that I'm on so many heavy-duty and expensive ones already that there was no need to add one more at this stage. The doctor said if the pain got too bad I might try one of those, but it was not worth it yet.
Good luck to you.
Genko
I take Cymbalta and Trileptal for the pain of the neuropathy.
I'm allergic to everything heavy duty (hydrocodeine, codeine, darvocet, and talwin).
I don't know if a Fentanyl patch has enough of a difference chemical structure to avoid my allergic reaction.
I'm hoping to get along, pain wise, for the time being.
I was sent home after knee surgery with instructions to take Tylenol.
Yep, Tylenol and ice. that was it.
I know the disease will progress, and yet I do hear that Methotrexate and Prednisone can somehow be of use?
What do they do?
I'm just learning it seems.
Carolina
Carolina:
Sorry for your troubles. My PN is progressing pretty fast too. I found that sleeping in hand restraints with the metal palms has helped my fingers, hands, wrists keeps my hands from going completely numb in the morning. I also wear softer velcro wrist restraints during the day as well. It's for carpel tunnel and a direct result of my pSjS. You might give them a try...
LeoLady
im having the EGM for the very same thing on june 15. funny though since dr. ordered test i havent had much problem... but my hand always goes to sleep when im on the phone...even itf its just a min or two.
sjs- funnnn stuff eh?
lori
Ah Carolina, Tylenol and ice for the pain and swelling? What in the world is your surgeon thinking? I know that you have problems with meds, but I thought that he could at least try something a bit stronger. My goodness, and I thought that the ENT that did my lip biopsy was bad about the Tylenol only routine (I'm allergic to codeine as well)!
Take care of yourself -
Patze
Caroline, I am wondering if you do indeed have carpal tunnel. The fact that the pain in at night is very interesting. When I had carpal tunnel pain that was excruciating it was at night usually. I thought I had a bad disk in my back. I had such pain from the middle of my back over my shoulder in the bra strap area and down my arms. My little fingers. I had pain between all my fingers in both hands but especially my right one.
Went to the doctor and here I had a darn good case of carpal tunnel going on and never really knew it. I had surgery and all that pain went away. The left bothers off and on and I am going to get that fixed as soon as I can work it into my schedule. Summers aren't a good time to do it.
It is common to have tendon issues any place in the body with the sjogrens. It causes inflammation in the tendons and can be miserable. I get it in the Achilles tendons off and on and don't dare jump out of bed in the morning. Have to tread carefully while my body loosens up in the morning. Rapid movement can cause tendon rupture. This happened to my son who has really bad hashimotos. Good luck. Irish
I wake up like this most mornings but I think mine comes from arthritis in my neck. Very often wake up in the night with pins and needles in my hands and lower arms. Like Navydad I just treat this as normal - perhaps I shouldn't.
Beverley
Dear beverly,
Yes, I had that numbness and tingling from the severe OA in my cervical spine (neck). My whole arm used to go to sleep.
For some reason that problem isn't so bad any more. I think I've learned to hold my head with my chin down to keep the pressure off my neck! Anyway my first indication of OA was that my hands and arms got numb when I slept and also at the movies if we sat too close and I had to hold my head tipped back.
This isn't the same thing, that I'm experiencing now. It is like what goes on with my feet and lower legs. Sharp pin like pricks in my hands, primarily the palms and tingling of my fingers and hands. And Aching in my arms from the elbow down.
I know it's PN. Progressing to my arms and hands much faster than I thought it would. I only found out about the PN in my legs and feet (I thought it was a bunch of other things in my hands and feet) last December, but of course it's been coming on for years.
So I guess the progression to my hands and arms isn't really as rapid as if seems.
Well I have to go get ready for my first doctor's appointment here in NC. A new cardiologist. Not very high on my priority list, actually, but the easiest appointment to get! Isn't that odd?
I'll make copies of all the documents and tests and pictures I have, for her files. I wonder if I should also give her the neurological stuff too, my last cardiologist wanted it, but I hate to overwhelm a new doctor with EVERYTHING at once. ;-)
We are settling in, and I need to start exercising again regularly, now that the UTI I developed when we were moving is gone.
I need to start QUICK before something else happens!
;-)
Keep me posted on your tingling and numbness. I have never considered surgery for my neck. I do have one of those devices for stretching my head up, to take pressure off my neck and give the nerves relief. It works quite well, but I resist using it for some reason. Maybe cause I have to sit in a chair for half an hour, silly me!
Kisses
Carolina
Good luck at your appointment - I will be thinking of you.
Beverley