Author Topic: This is happening to me - Any ideas.  (Read 2402 times)

cremer

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This is happening to me - Any ideas.
« on: November 22, 2013, 06:05:20 AM »
Hi guys haven't posted in a while but I have been reading your posts, just haven't had the energy after a full time night shift to be bothered to post. The fatigue has been really bad and all I want to do is curl up and sleep.

I have Sjogrens for quite a few years now and this last six months I have been getting the following symptoms, I think I know what it is I just need you lot to reassure me.

Burning sensation in hands and feet
Shooting pains in legs
Pins and needles like ants crawling over your legs and feet
Hands feel really heavy and have a deep painful sensation within them.
My soles of my feet are very painful and it's hard to stand on them for long periods
Itching especially in palms of the hand

Any ideas.

eye2dry

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Re: This is happening to me - Any ideas.
« Reply #1 on: November 22, 2013, 09:06:50 AM »
Hello.

Sounds like PN .

I have 2 of your symptoms but have not brought it

up to my rheumy yet.

Some on this forum have the PN diagnosis and can

tell you lots about it.

I too am much fatigued and find I sleep way too much and

still do not feel rested when I get up.

take care and I am sorry you feel so terrible.

eye2dry
medications: synthroid- Cymbalta- plaquenil- lots of supplements

***Lord help me to be the person my dog thinks I am***

Ark mom

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Re: This is happening to me - Any ideas.
« Reply #2 on: November 22, 2013, 09:48:38 AM »
I have most of those symptoms.  I do not have a peripheral neuropathy diagnosis as of right now, but I do take neurontin.   

NEUTONTIN IS MY BEST FRIEND!!!!

I love it, and it masks all of these symptoms for me.  I can sleep at night.  I can walk and stand on my feet.  I can wear athletic shoes again, which used to make my feet fall asleep.  Get to a doctor and ask for help as there are several medications that can make you feel better. 

Take care!  Hugs.
41 yo with Sjogren's (sero-neg), FMS & sub-clinical Graves; Plaquenil, Evoxac, prednisone, Restasis, Cellcept, gabapentin, duloxetine

cremer

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Re: This is happening to me - Any ideas.
« Reply #3 on: November 22, 2013, 10:46:17 AM »
Thanks for your answers and it's exactly what I thought I had.

I've got a docs appointment on Monday to bring it up so hopefully they can give me something for it.

Just one thing, does PN come and go similar to Sjogren flares as mine is definitely worse during a flare.

Ark mom

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Re: This is happening to me - Any ideas.
« Reply #4 on: November 22, 2013, 11:14:01 AM »
The intensity of the symptoms gets stronger with flares for me.  Sometimes after many months, some symptoms with go away even, as perhaps the nerves are healing.  I do know there is some permanent damage in my hands as the baseline symptoms there do not ever go away. 

I hope you get feeling better.  In my previous life, I never took medications!  Now I take lots.  ;) Keep bugging the doctor until you get relief. 
41 yo with Sjogren's (sero-neg), FMS & sub-clinical Graves; Plaquenil, Evoxac, prednisone, Restasis, Cellcept, gabapentin, duloxetine

Ripvanann

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Re: This is happening to me - Any ideas.
« Reply #5 on: November 22, 2013, 11:16:31 AM »
Hi cremer. Sorry about what you're going through. I have PN and yes, it does sound exactly like it. The crawling sensation can also come when you have Raynaud's and your extremities change temp. The circulation is changing and it creates that feeling. The burning and heavy feelings are most likely PN though.

I can't take neurontin but I do take another anti-consvulsant that works wonders like neurontin does for Ark Mom. The name is Trileptal. There are a few out there, but neurontin is the standard go to. Hope you can get some help at your appointment on Monday. Keep us posted.

Peace and blessings,
~Andrea
 
Primary SjS, Steroid Induced Cushing's Syndrome, RA, Thyroiditis, Hyperparathyroidism, Raynaud's, Autonomic & Small Fiber NLeuropathy, Fibro. Osteoporosis, & other fun stuff associated w/ the afore mentioned. ~Meds: prednisone, Plaqu, Citracal D & Pain Meds, Compazine, phenergan, Iberogast.

anita

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Re: This is happening to me - Any ideas.
« Reply #6 on: November 22, 2013, 11:19:09 AM »
Sounds like PN or small fiber neuroapthy.  You should have some basic testing before just treating it...like an EMG/NCS and/or skin biopsy.  Treatment is based upon findings and possible cause (there are over 100 causes of PN).

If your appt is not with a neuro tomorrow, then ask for a referral (if needed) or just make an appt with one.
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

cremer

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Re: This is happening to me - Any ideas.
« Reply #7 on: November 22, 2013, 11:31:35 AM »

If your appt is not with a neuro tomorrow, then ask for a referral (if needed) or just make an appt with one.

No it's just with my regular GP, I'll try and get a referral to a Neuro.

The worst part is the heavy sensation in the hands as if I'm wearing lead gloves all the time.

Carolina

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Re: This is happening to me - Any ideas.
« Reply #8 on: November 22, 2013, 11:50:55 AM »
cremer and eye2dry,

There are very good articles about Peripheral Neuropathy on the home page of Sjogren's World, that sponsors our forum.

Those who take Plaquenil and Methotrexate will know if those medications help at all with the PN symptoms.

Lyrica or neurontin or one of the anticonvulsants help with the pain.

the issue of stopping the progress is a different thing, I think.

My PN is profound. 

Hugs,  elaine
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

cremer

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Re: This is happening to me - Any ideas.
« Reply #9 on: November 25, 2013, 06:43:32 AM »
Well I went to the docs and actually saw a new one as my usual one was busy, I'm actually pleased about this as my usual one seems to be getting a little blasais about my complaints.

This new one tested my reflexes, run a pin up and down my feet, legs and hands. A little bit worrying was she couldn't find a pulse at my wrist for some reason and after a while gave up.

In the end she said my feet seemed fine, my hands showed signs that something was wrong but she thought it was arthritis, that was worse then normal due to the cold weather.

I'm very sceptical here as I've had these pains for nearly 6 months now. Anyway she's ordered a lot of blood work to be took.

I know I do have arthritis in my hands and knees as it showed up 2 years ago in an x-ray i had. Can arthritis pain be similar to PN pain?