Pots pain?

[Jaci]

Anyone else with pots have chronic uncontrolled pain?? They've done alot trying to figure out why i have this pain but they usually just say its because im a cancer survivor just deal with it.... im sick of dealing im just wondering if anything helps yall? Or if this even normal from pots.... so many questions sorry yall im still new to my pots diagnosis.

 

UPDATE- I've been diagnosed with eds this explains alot of my pain thank yall everyone also looking in to the small fiber neuropathy. 

[Pistol]

Hello @Jaci! Yes, chronic pain CAN be a symptoms of POTS, but it depends what type of pain you experience. Many people get fibromyalgia-like pain with dysautonomia, and others have joint pain ( suspected to be of inflammatory nature ). When I became severely ill with HPOTS in 2009 I also started to have generalized joint pain. All of my joints hurt and were stiff and swollen. A rheumatologist checked me for unrelated AI disease twice, coming up empty. Last year my autonomic specialist stated that they now know that often POTS is linked to auto-inflammation ( not auto-immune ). He started me on Plaquenil ( hydroxychloroquine ) in January and my joint pains AND SOME OF MY POTS SYMPTOMS have greatly improved. --- So - if your pain could stem from inflammation it is possible to be connected to dysautonomia as well. 

[CallieAndToby]

Yes I have bad pain. It was one of my first symptoms actually and they still haven't labeled it for me but I think it may be some sort of small fiber neuropathy. In high school they had me on a pile on medication for pain and the thing that helped the most was Vioxx a NSAID but it was taken off the market. I have tried strong controlled pain killers, Cymbalta and other anti depressant type drugs and they don't work. The worst pain is in my right hand and I did PT and everything known to man to try to get it to stop because I had to quit playing my main instrument because of the pain.  Edit: All this pain makes it very hard for me to sleep but mainly the pain in my bladder. 

[MTRJ75]

I don't get what you would label normal pain (like joint pan) as one of my worst symptoms, but there is severe aching and burning all over my body, along with severe cramping or squeezing/constricting sensations (I still don't know how to accurately describe it). Mostly muscle discomfort, but so significant that I would label it as in the pain category. 

[MomtoGiuliana]

I also have pain with POTS relapses.  I have read that POTS patients are more sensitive to pain.  I get aching, burning and other sensations much like what MTRJ75 described.  I also get headaches that don't respond to OTC pain relief.  Last relapse I had severe kidney pain that was unable to be explained despite extensive testing.

[p8d]

One of my first symptoms was neurogenic bladder pain and I had terrible neurogenic pain after eating about 6 months in. I suffer/ed terrible musculoskeletal pain on and off throughout the past 7 years of this. Treati underlying autoimmune disease helps. By coincidence I found this article today. It discusses peripheral nerves and pain and many of us have small fiber neuropathy (peripheral nerves. https://www.theguardian.com/australia-news/2021/jun/28/sufferers-of-chronic-pain-have-long-been-told-its-all-in-their-head-we-now-know-thats-wrong?utm_term=47559555f650c1aea37e281403b62ecf&utm_campaign=USMorningBriefing&utm_source=esp&utm_medium=Email&CMP=usbriefing_email
 

I hope the link works.

[CJ65]

Yes. My pain is more inflammatory in nature to joints and pretty bad myofaschial pain to upper back. Definitely worse after sitting and when I do too much. POTS and all of my issues started after cervical spine surgery. Unfortunately I still had pain in my neck and arm post op plus the new added hyperPOTS bonus. 
 I have tried all the pain modalities with some relief that makes it bearable for the most part. That includes: mindfulness, ice, heat, acupuncture, massage, trigger point injections, epidural, TENS unit, foam roller, Qi Gong, yoga, PT, cymbalta (I had very bad serotonin syndrome reaction and horrific withdrawal before I knew I had hyperPOTS), NSAIDS (can’t take anymore because of my BP), Gabapentin etc etc. What helps me most daily is gentle movement (my PT says “motion is lotion for the joints), resting as needed throughout the day (if I push through fatigue and don’t rest all of my body hurts-listen to your cues), and when it gets worse later in day I often take Tylenol or Tylenol with codeine. I’m not advocating for opioids in general but I've been taking the same low dose for a few years now without a problem. Probably the most helpful thing was early retirement/disability. I fought doing that for 3 years because I loved my career but in the end it was the best thing to do for all of my symptoms. 

[CallieAndToby]

5 hours ago, p8d said:

One of my first symptoms was neurogenic bladder pain and I had terrible neurogenic pain after eating about 6 months in. I suffer/ed terrible musculoskeletal pain on and off throughout the past 7 years of this. Treati underlying autoimmune disease helps. By coincidence I found this article today. It discusses peripheral nerves and pain and many of us have small fiber neuropathy (peripheral nerves. https://www.theguardian.com/australia-news/2021/jun/28/sufferers-of-chronic-pain-have-long-been-told-its-all-in-their-head-we-now-know-thats-wrong?utm_term=47559555f650c1aea37e281403b62ecf&utm_campaign=USMorningBriefing&utm_source=esp&utm_medium=Email&CMP=usbriefing_email
 

I hope the link works.

Thanks for this article. My first symptoms were with my bladder when I was just a child including pain but also urgency and frequency. I will take a look at this article. Edit: The link works. 

[CallieAndToby]

5 hours ago, p8d said:

One of my first symptoms was neurogenic bladder pain and I had terrible neurogenic pain after eating about 6 months in. I suffer/ed terrible musculoskeletal pain on and off throughout the past 7 years of this. Treati underlying autoimmune disease helps. By coincidence I found this article today. It discusses peripheral nerves and pain and many of us have small fiber neuropathy (peripheral nerves. https://www.theguardian.com/australia-news/2021/jun/28/sufferers-of-chronic-pain-have-long-been-told-its-all-in-their-head-we-now-know-thats-wrong?utm_term=47559555f650c1aea37e281403b62ecf&utm_campaign=USMorningBriefing&utm_source=esp&utm_medium=Email&CMP=usbriefing_email
 

I hope the link works.

Wow good article!! I really understood with the guitar analogy. I will say that my pain started in my bladder as a child then into my shins and legs as a teenager then early 20's a particular finger in my right hand. Unbelievable headaches. All of this affects my sleep and causes fatigue. I have a neurologist he says he's "leery" of prescribing anything, well what am I supposed to do? I have a friend who is bed bound now but her first symptom was pain in her eyes, she went all over the country and they couldn't figure it out, now the pain has spread throughout her entire body and like most people she can't get any help or treatment unless it's an anti depressant. She had an acupuncturist treat her weekly coming to her home and it really helped her so she found one in my city to treat me but acupuncture made me crazy sick and fatigued. After one session I would sit in the waiting room unable to drive home so fatigued and tired and one day another practitioner said to me, "I'm really worried about how you look. You're pale and white as a ghost and exhausted after these sessions." She bought me some water and food and let me rest until I could go home. I quit doing acupuncture after that!

In terms of my bladder, a urogyn kept wanting to prescribe amitriptyline but I already lost so much weight and I have these hormonal issues causing weight gain and I'd already taken nortriptyline for years so he told me, "it won't make you blow up", anyhow I asked a group of IC patients how much weight they gained on it and they all responded "about 50 lbs". Only one chronic pain specialist would see me and only offered shots that he claimed would be excruciating. Lastly, I got a vaccine on Friday and that night I woke up and I was in severe pain and the areas that are normally in pain already were heightened beyond my ability to describe and an inability to even walk b/c the shin pain was so bad; at this point I concluded it had something to do with my immune system and I alerted some of my doctors. 

[Jaci]

I found out my issue everyone... I have eds also. So I'm in pain from that more than anything

[cmep37]

I've also got hEDS and POTS - I sympathise with you!!  Any questions feel free to ask!

[Sushi]

13 hours ago, Jaci said:

I found out my issue everyone... I have eds also. So I'm in pain from that more than anything

My pain comes from EDS. A good PT can get me out of it, but it doesn’t last. The PT’s home exercises to improve muscle tone (to make up for the stretchy ligaments) also helps a bit. I am looking into the Cusack protocol for EDS as many report that it helps them.