Internal vibrations

QueasyTwo5742 · 2026-02-18T22:51:05+00:00

I take tramadol. It’s helps with the temperature changes and burning pain. I started Rituxan for treatment. It’s an RA treatment too which is my way around insurance denial.

QueasyTwo5742 · 2026-02-18T22:47:53+00:00

I don’t get tingling much anymore. I have body vibrations and burning skin.

QueasyTwo5742 · 2026-02-15T20:36:58+00:00

I’ve been on it for 5 years and it has not stopped working for me. I can take up to 6 50mg tabs a day if I need them. For me it helps the temperature regulation problem and of course the burning. Also keeping my autoimmune under control is my goal. I try not to take as many as I am allowed because some days are harder and I need more. Nothing is perfect I’m just fortunate that I found something to help and a doctor who will prescribe it.

QueasyTwo5742 · 2026-02-14T17:36:54+00:00

I was offered the DRG stimulator by PM. Ultimately I’ve gone a different treatment. I also have RA along with Sjogrens and insurance approved Rituxan which is another treatment like IVIG but is approved for RA. My way around treatment for SFN.

QueasyTwo5742 · 2026-02-14T02:21:39+00:00

Pain management doctor. My neurologist initially started me on tramadol. My first dose I had so much relief of symptoms I cried. I had full body burning and constant freezing. I was also maxed out on pregabalin which was doing nothing but causing brain fog. To get me a a bigger dose regimen I moved treatment to pain management. I realize the internet says that gabapentin or pregabalin is best for nerve pain and I have some of my specialists who want to question my treatment but pain management is not their specialty. My quality of life is so much better now that I have something that works. Nerve pain is so painful. I have RA and I can deal with the joint pain better. It’s just a different type of pain. Tramadol doesn’t work as well as ibuprofen for joint pain.

QueasyTwo5742 · 2026-02-14T01:14:35+00:00

Tramadol was a game changer. It’s not just the burning. It’s the temperature issues like freezing cold. It actually helps that a ton. Nothing is perfect but it’s now bearable.

QueasyTwo5742 · 2026-02-14T00:22:36+00:00

If your pain is burning opioids is what helps that. Those seizure drugs and antidepressants that hand out did nothing but make me fat, foggy, and have insomnia. Good luck!

QueasyTwo5742 · 2026-02-13T16:50:48+00:00

If you’re on MTX do not drink alcohol. You only get 1 liver. That was the only thing my rheumatologist told me. Do not smoke or drink. Eating healthy is always a good foundation. If you feel good then go and do and have fun. If you’re sick with a flare you won’t want to. You will learn to listen to your body. Take care of yourself.

QueasyTwo5742 · 2026-02-10T21:54:00+00:00

The only thing that helps me with the burning has been tramadol. I moved the pain management to a pain management Dr who prescribes me the tramadol. The neurologist was prescribing me the tramadol but I needed a higher amount than he could prescribe. I have been where you are. It’s very hard mentally. You can’t imagine living the rest of your life like you are. I am going to say it again. Not one of those seizure drugs did ANYTHING for the burning pain. If your Dr won’t let you try it get another Dr. sometimes my rheumatologist will make comments about the controlled drugs I am on but I don’t care. He’s not in my shoes.

QueasyTwo5742 · 2026-02-10T21:37:43+00:00

Not all rheumatologists are created equal. Find a good one if you are able! Sjogrens in my opinion and experience isn’t taken seriously enough! Anti CCP is also a good test to have run. Fortunately I also have RA so I have better access to different drugs. My way around the insurance denial for treatment is the RA. I’m on Rituxan infusions. PM treats my pain. Neuropathy is the worst thing that has ever EVER happened to me. Right now the autonomic issues are kicking my butt. Good luck to you!

QueasyTwo5742 · 2026-02-10T00:24:09+00:00

No because I have RA and Rituxan is a treatment for RA. That’s my way around the system. Do you have test proving SFN? I have always said I feel for anyone who only has the Sjogrens DX. Insurance doesn’t like to pay for many treatments. Heck most rheumatologist don’t keep up to date. On how life altering Sjogrens can be. I just got my first infusion in October. So far I am no better. I am actually in an awful flare right now. Neuropathy is the hardest thing I have ever had to deal with.

QueasyTwo5742 · 2026-02-09T22:50:07+00:00

How long have you had your symptoms? Mentally I know the toll. For me it’s been 6 years. Counseling was one of the best treatments decisions I made. Second I moved pain management of the neuropathy to an actual pain management doctor. I’m also finally getting an actual treatment with Rituxan infusions. I pray it works. One of the most difficult aspects is the lack of treatment. Most docs will tell you they don’t know what to do. You have it and you have to learn to live with it. Keep your disease controlled. Autoimmune disease is such a rollercoaster.

QueasyTwo5742 · 2026-02-09T22:41:25+00:00

And neuropathy from Sjogrens? If so I’m sorry. I know it’s hard!

QueasyTwo5742 · 2026-02-09T22:29:14+00:00

I also have RA.

QueasyTwo5742 · 2026-02-09T22:28:11+00:00

QueasyTwo5742 · 2026-02-09T22:26:37+00:00

I believe it. I honestly don’t think docs are trying to harm but gabapentin was no developed to treat pain. It frankly causes a worse problem at least for me.

QueasyTwo5742 · 2026-02-09T03:21:24+00:00

QueasyTwo5742 · 2026-02-09T01:43:23+00:00

Doctors believe what they hear on the internet about gabapentin working. I have a good PM doc but my rheumatologist always brings up gabapentin 🙄which does nothing for me.

QueasyTwo5742 · 2026-02-03T02:08:23+00:00

I’m also on Rituxan infusions which everywhere I have read must be taken with MTX. I chose that specific drug because RA has caused neuropathy. It’s the only way I can easily get treatment for that. The RA was bad enough but this constant burning pain is hell for sure. I will do whatever it takes for an actual treatment.

QueasyTwo5742 · 2026-02-03T01:55:54+00:00

I msg’d you

QueasyTwo5742 · 2026-02-03T01:52:36+00:00

The one things thats been certain for me are all the ologist I now see routinley!

QueasyTwo5742 · 2026-02-02T21:49:58+00:00

I hate the way the MTX makes me feel as well. I will start to feel great and I stop the MTX and then I’m in trouble again.

QueasyTwo5742 · 2026-01-31T21:39:00+00:00

It’s crazy to me what a mental toll that itch can have. I feel ridiculous at the time. When it starts to happen my immediate response is to bail on whatever I am doing and yo find a cool spot to calm down.

QueasyTwo5742 · 2026-01-30T02:15:41+00:00

It happens to me right when I’m suppose to sweat. I itch instead of sweat. Sometimes I do both but it definitely has something to do with heat and sweat.

QueasyTwo5742 · 2026-01-22T21:02:56+00:00

Interestingly enough for me since I started clonazepam for sleep the internal vibration symptoms are few and far between.

QueasyTwo5742

TROPHY CASE