Extreme pain in hands

*tight, not right
My hands never feel "right".

I have the exact same problem of my hands, feet, and it is growing up both of my legs I mean my calves, thighs. It is getting excruciatingly worse by the week. It is the worst feeling ever tingling is so. and the tightning feeling is just unbearable. They just keep telling me that there is nothing that they can give me that they haven't already given me to help me with this. All of the tests that they have Brian such as MRIS and such show nothing so I think with half of the stuff they just think that I am crazy. The EMG shows the neuropathy but other than that I can explain why it's so bad my neurologist is says that it's a very rare form after peripheral neuropathy in the small fiber neuropathy. So I don't know what to do to help me. I cannot sit up for more than 10 minutes without it getting so bad that I have to go back and lay down in the bed to make my hands feel a little bit better. I can't stand very long without feeling the same way so I just get in my bed because I don't know what to do to be able to relax my hands I just keep my arms up pillows that's how bad it is.

@pjc820, You mentioned in a previous post that you have been diagnosed with Sjogren's syndrome and are taking Plaquenil. One of the more rare complications of Sjogren's can be peripheral neuropathy. You can find more information on Mayo Clinic's website here:
https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/symptoms-causes/syc-20353216
Plaquenil (Hydroxychloroquine) has a known side effect of causing peripheral neuropathy -- see Foundation for Peripheral Neuropathy: Medications that can cause peripheral neuropathy -- https://www.foundationforpn.org/wp-content/uploads/2016/10/Medications-that-Can-Cause-Peripheral-Neuropathy.pdf

There is another discussion that might be helpful to meet other members discussing what helps them.
Sjogren’s Syndrome – Introduce yourself and meet others: https://connect.mayoclinic.org/discussion/sjogrens/

Have you discussed the treatment for Sjogren's with your doctor to see if there are any alternatives?

@pjc820 I'm so sorry for all your going through. I completely understand and experience what you feel. Last night and this morning was a doozy with my hands. Actually, I shouldn't be typing but I feel bad for you. I've soaked my hands in cold water (fill the sink). It feels good to put them between couch cushions
strangely enough. Applying pressure is kind of like massaging. Then there is heat...I use a microwavable heat packs on hands, shoulder, back , legs, feet, you name it.

Are you already on the typical neuropathy meds to help reduce some symptoms? Are you on a supplement protocol?

What is supplement protocol. There's no way I could put my hands and cold water they would freeze off like I was sticking them in snow. My hands get so cold that I have to wrap them up and it seems like it takes 45 minutes for them to get warm. It is terrible they just get worse and worse as the days go by. I'm on gabapentin, Cymbalta. And Topamax. What are you taking for this that might be helping you. I have tried everything and nothing seems to work so I don't know what to do. Everybody knows that opioids don't help with nerve pain and we can't seem to figure out what nerve drug it's going to help me. So if you have any suggestions please let me know because I am suffering immensely. I even have it around my ribs and abdomen to where it feels like it's going to literally squeeze the life out of me.

I have not. I see my doctor in a couple weeks so I will talk to her more about it. And I'm trying to get back into the RA but they had to reschedule my appointment until July so it has literally taken 7 months for me to get in I had to change doctors because of my insurance.

@pjc820 That squeezing does not sound fun for you. I've gone through temperature irregularities as well so perhaps it comes down to adapting to what works best at the time. I'm curious if heat helps, not only your coldness but, to calm and sooth the sight.

@johnbishop found a Facebook neuropathy group that founded a supplement protocol. I'm sure he will post it for you again. It is a full plan of supplements which I and others on this forum have felt beneficial for our neuropathy. Neurologists mainly recommend R Alpha Lipoic Acid and Stabalized Acetyl L Carnatine for nerve damage. I agree that they are the most impactful for me. Other helpful supplements may be magnesium, B vitamins. etc... depending on your case.

Opiod therapy is a drastic measure for pain from neuropathy. It does not heal, cure or regenerate nerves however, it masks pain and allows for better comfort. I benefit from opiods but, thats me.

It took me some time to realize that my nerve disease needed a "multitude" approach. Example: gabapentin/ lyrica, vitamins/supplements, healthy diet, no alcohol, tolerable exercise when possible, physical therapy, massage/myofascial release, meditation/mindfulness. It's not a one size fits all approach unfortunately and can be challenging, frustrating and annoying when all you hope for is relief from pain.

For me, I receive some benefit from each approach and together, the best relief that can come my way. Truthfully and sadly however, you and I and others will still not be normal because of our disease and still be left to experience pain and discomfort.

If I were you, I would be clear on diagnosis with Drs. Make sure they are doing all they can to help you. Then it's up to you to search and learn which is exactly what you're doing here on Connect.

I hope I've been helpful to you today. If it weren't for an opiod...I wouldn't be typing to you and fyi...still painful. (I'm throwing around some inappropriate words just to get through it).

I also use medical marijuana to supplement for pain. Is it legal in your state? Have you explored the option?

Rachel

@pjc820, the protocol of supplements @rwinney mentioned I found on a closed Facebook group. We used to order the supplements individually through Amazon.com links on the groups website but the leader of the group formed a 501c3 and the leader and some of the members worked with pharmaceutical companies to combine some of the supplements to reduce the number of pills we were taking. The new 525 product we use is named for 5 pills in the morning, 2 at noon and 5 in the evening. You can find more information on the website here: https://solutions2pnpd.com/. I would recommend joining the closed Facebook group first by using the Join button on the website and then learning what it's all about by reading the new member welcome message/post. If you want to see all of the member success stories you can use the search the group using #theprotocolworks - it brings up all of the posts where members post the success they've had.

Hope this helps.

John, would you recommend the protocol for someone like me? I have hereditary polyneuropathy with no pain.

@stefspad, since you don't have pain I'm not sure how much it would be helpful for you. I don't have pain but I do have numbness with my small fiber PN. I've been taking the supplements for a little over 3 years and feel they have slowed or stopped the progression of the PN in my legs. When I started it was a little below the knees and now seems to be at or slightly above the ankles and my feet are feeling a little better over the past 3 months or so since I started doing more exercises. The protocol of supplements is not a cure but it does help with the symptoms of neuropathy. Also, I would recommend running any supplements by your doctor to make sure they don't conflict with anything else you might be taking. Doesn't cost anything to join the closed Facebook group from their website and then read through the success stories of other members since there are close to 10,000 members now with various symptoms and neuropathy diagnosis. Just make sure you read the new member welcome when you join.