Hi Mary. I am sorry that you are having such pain. I know how you feel. It is not fun to say the least.
My story is so complicated that I will not even go into it..but I have had those tests and I too have nerve damage and now have this horrible "carpal tunnel" pain in both wrists ( worse on my left side though) and we have not figured out why I have it. I did have the other pain you described...but that has improved/gone away for the most part as so many of my symptoms do.
I was on Cymbalta and Lyrica and am off of both now. Now I really only take one pain medicine ( well one rx med and tons of aspirin. tylenol and motrin). I just am in constant pain and it is difficult, esp not knowing why.
I am sorry I don;t really have any advice to give just wanted you to know you are not alone!

Mary, You didn't mention how long you have been on Lyrica. I'm so sorry that you are are having such a terrible problem. It's pretty hard to get through a day with feet that are giving your fits.

When I was first treated for peripheral neuropathy, I didn't notice much improvement for the first six months or so. In fact, the Neurontin made me feel like I had a helium balloon for a head, and I found concentrating much more difficult. Finally, after doing some research, I asked to switch to a different medication that was supposed to have fewer "brain fog" side-effects. Trileptal was an improvement, but not great. Then my rheumy gave me a prescription for Gabitril instead, which he said would help with my Fibro pain and the neuropathy. Finally I could really tell a big difference in my pain. Before Gabitril, just standing for a few minutes would give me similar reactions as you described. The burning, stinging, electrical zaps, numbness made standing miserable, and I found the loss of the ability to tell what my feet were doing was so frustrating. With the Gabitril (12 mg twice a day which is a big dose according to my rheumy) I was able to regain the ability to tell the difference between standing on carpet or tiles.

I did permanently lose the ability to sense temperatures in my feet and partially in my ankles, so can't test the shower temperature by sticking my foot in the water. On the up side, I can stay in the ocean a little longer since I don't get cold as quickly so I try and look at that as a plus.

After being thrilled with my results for five years, last September I developed a severe allergy to some of the components of Gabitril, so I haven't been able to take it since. What I've found is that I have had a lot of improvement and now that I'm on Methotrexate, my symptoms are significantly milder than before I started on medications. I get the occasional mini-zap, but the burning and stinging is still gone. Also have lost most of the Fibro pressure point sensitivity which is also a blessing.

I have a Sjogie buddy who ended up with Lyrica and Gabitril to get relief, but her unhelpful MD had allowed her symptoms to become extreme (like yours) before she was given any medical help. She has more residual damage, but has been thrilled with the relief from the combination of the two medication.

Also wondered if anyone had ruled out Plantar faciitis as a second complication with your feet? It leads to the formation of bone spurs and often is caused by inadequate arch support in your footwear. My poor husband is plagued with it, and some days can barely take a step because of the pain. He has tried a number of things, but finds that good shoes, gel heel pads to cushion the stress of walking, and several stretching exercises have helped to keep him mostly pain free. You can Google it to find out more.

I know when we have Sjogren's, everything is usually blamed on it, but sometimes there is actually more than one problem happening at the same time. I hope you will be able to get some help to get this under better control.

Hi marycanelas. I wonder how long you have been on the Lyrica and plaquenil. Like was mentioned, it takes quite awhile to really feel improvement. I first got all the diagnosis going at 14 months ago and started on these two drugs. It took about 4-5 months to feel pretty good improvement, and just now (a year later) I would say it is very good improvement. So it may seem like a long time, but hopefully you can continue and really give the meds a good try. My nerve pay is so much better today because of these two drugs. I also take tramadol during the day for the muscle and joint pain and between the combination of those things, I feel pretty goog. I still work full time, so I have to try and keep the balance of the right drugs until I can retire, which is sometime away.

Hang in there and hopefully you will begin to start noticing improvements in your pain levels soon.

Hi Mary, I can definitely relate!!! I also am the mom of 2 boys and have had this pain so long they really do not remember me ever playing with them as far as running around and outdoorsy things. I thought mine was due to fibro and so I started taking Lyrica. I will tell you though that you have to slowly up the amounts of Lyrica to feel any benefit. I started out with 75mg twice a day then went to 150mg twice a day. They wanted me to do three times a day but my insurance wouldnt go for it. I also took prednisone for awhile. I really liked prednisone because it gave me "peace" -- there was no pain, I could flex every part of my body and it felt like nothing was there because there was no pain. Everyone says, "what do you mean when you say 'it feels so nice to cross my ankles and feel absolutely nothing'?" they have no idea what I am talking about because they do not suffer chronic pain. They took me off the prednisone because my RA factor is not 30 yet. As soon as it hits 30 (currently a little over 20) they will diagnose me and put me on Plaquenel they say. I can tell you my pain in my toes and fingers is what kills me. It is like there are millions of cell sized bombs going off all over my fingers and toes at the same time. Miserable.

I hope that you get some relief soon. Maybe upping the doseage of the Lyrica.....I know that 75mg twice a day did nothing for me. However, they upped it to 150mg twice a day and it became my new miracle drug! Talk with your healthcare providers and see what they have to say about your doseage. Maybe that could help.l

I don't mean to argue with anyone, but I do believe that alot of these neuropathies are caused by the inflammatory process of Sjogren's or other AI's for that matter. The inflammation that occurs does not discriminate. It goes everywhere - nerves, joints, muscles, tendons, eyes, mouth, skin, brain, organs. I have had neurological involvement and had nerve conduction studies done where some of my numbers were not normal. I have not taken any meds for this, but I do get pain, numbness and tingling in all of my extremities. I have not had it constantly though, but if I did I would look for a med that would help me. Good luck and I hope you find something that helps and that you feel some relief soon.

I just wanted to mention that Diabetes can cause neuropathies also, but again it is because of an inflammatory process. You did not mention whether or not you may have Diabetes.

Sorry to hear that your in so much pain!! It seems like a lot of people here are on Lyrica which now my doc said if i have fibro they will put me on it but i can't stay on it cause i guess it's very addicting but if it helps great!! I also want to try a herb drink/capsules called Matol as i was on it as a kid and it has 15 herbs and alot of people have been helped by it and had great results so if i don't go on Lyrica i'm going to try this as i was on it as a teenager for pms and acne!! It has helped people with alot of diseases and severe pain!! If you want to read up on it google it and go on Matol!! There's alot of good testimonials!!
Take care and i hope somethings helps for you soon!!

thank you everyone for your input. I have been on lyrica 200mg 3x day and plaquenil 200mg 2x daily and I have been on both of these meds along with many others for several years, and no I do not have diabetes.
I was diagnosed with RSD this week, so I am about ready to shoot my foot off. I feel like it can not get any worse now.

I am new to the site. I have been diagonsed with Sjogren's, Fibro and Raynaud's for many years, but this summer I had a flare-up that was so bad that my whole body felt like somebody was pushing pins in my body and I had an incident where I had blurry vision in my right eye. I was having severe headaches. It lasted 6 weeks and got better when it got cooler labor day weekend. I am having strange symptoms. An EMG showed mild abnormal nerve conduction problems. I am worried that the other sydromes are being blamed when there is actually a new problem.

Has anyone here been tested for MS?

Hi Mary, I am having the same kind of problems. I have nerve damage that is really really bad in my legs, feet, arms, hands and legs. I start IVIG on Monday. I'm only 27. I was just diagnosed in Jan of this year. My drs. are concerned because the SS is progressing so rapidly. I'm in so much pain at times I can't even walk. MS test have been neg. I am scared as to what is next if the IVIG doesn't work.

Hi Mary, I feel you pain as they say. Tho it sounds as tho yours is worse. My feet have been hurting off and on for 20 years or so, tho my SS was diagnosed only two years ago. Who knows? Maybe the foot pain has nothing to do with the SS. My Rheumatologist says it does not, but why shouldn't the feet hurt along with everything else? I find that I really hate having to run my life's activities past my feet to see if I can do them! We are retiring and going traveling in January, but I am afraid my restricted ability to walk will constrain what we can do. And my hubby is in very good shape, with none of my problems. I use ice, heat, Hydroxychloroquine and Piroxycam, and the podiatrist just put me on a salve so my rheumy says I have to stop one of the meds. If it is caused by damaged nerves, could anyone tell me what kind of a doctor should I be seeing for it?

I know just how you feel-literally! Right now on gabapentin and pain meds as well as Plaquenil. Some relief, but I still walk on side of my foot as flexing toes and foot is a challenge.