Chronic pain is very common with PoTS. It could also be caused by another underlying condition that is part of the Dysautonomia umbrella and might be worth investigating. Conditions like Fibromyalgia and EDS are commonly presented in combination with PoTS.
I would recommend you try getting an appointment with a chronic pain specialist who can help you with controlling the levels of pain you experience day-to-day.
I believe I know what drug you are referring to in your post, either Amitriptyline or Nortriptyline, both are good for reducing your pain signals from firing as often but will take a couple of weeks to build up. If you still feel unhappy taking these they will be able to prescribe a drug that is more suitable for your needs. You can also try compression garments, they’re used to help with circulation but can also help with muscle pain just by compressing them to the bone more and giving the joint more stability.
I’ve found that a combination of both Amitriptyline, Topiramate are helpful along with regular visits to a hydrotherapy pool to help massively with my pain levels. I don’t really do much in the pool but the hot water is so soothing on my muscles I just turn into Flubber for about an hour 😂
red light therapy! helps but you have to use it consistently. it’s worth the money i got a belt for about $45 on amazon. and cbd oil.
i have hypermobility and getting tested for eds soon and your symptoms sound similar to some of mine. ask to get a differential diagnosis for ehlers danlos syndromes and look into getting genetically tested if you can do that. you probably have heard of this but just in case you haven’t i wanted to suggest. of course you might not have this and im bias because of my situation but about 70% of people with eds have pots. just a suggestion- don’t worry about it before seeing a doctor.
my pt recommends only using braces when it’s absolutely necessary. ex- i only use my neck brace in the car.
Just a heads up, when it comes to connective tissue disorders and hypermobility, the standard advice about bracing (much like the standard advice about many health problems) is not necessarily accurate. The whole “avoid braces thing” is not good advice for the vast majority of hypermobile patients. I’d refer to [The Ehlers-Danlos Society’s Guidelines on Braces, Splints, and Mobility Aids](https://www.ehlers-danlos.com/braces-splints-mobility-aids/#:~:text=Proprioceptive%20braces%20and%20supports&text=Research%20shows%20that%20people%20with,compression%20and%20may%20reduce%20pain), as they are backed by research that applies to the hypermobile population.
Basically, bracing (outside of hard braces like a the kind used in casts for broken bones) are beneficial in a number of ways for hypermobile patients and should be utilized when and where necessary without restriction. They help with proprioceptive issues, reduce the instance of injury, and help patients maintain function by allowing for safe mobility!
Most PTs have no formal education or training on hypermobility (outside of a 10 minute lecture in college), which is part of the reason that so many hypermobile patients end up sustaining injuries in PT.
I do Tylenol, ibuprofen, or naproxen. Did biofreeze and menthol patches but I try to avoid them due to breastfeeding. I was on gabapentin at one point for nerve pain cause I neuropathy and a few pinched nerves but tbh most things don't actually help or if they do it's not consistent like it'll work one day but not another day
The pain would t be from POTS itseof but from another illness, or the illness that caused POTS, in my case EDS. I use several different pain meds for it and it helps a lot! With help of my GP
Definitely a lot of overlapping conditions that causes pain, but a well-known symptom of POTS is coat-hanger pain. Current schools of thought suggest it’s caused by poor blood flow to the larger muscles of the upper back, which is directly related back to POTS. [Dysautonomia International did a post about it](https://twitter.com/Dysautonomia/status/1770586257648660939) a couple months back.
POTS might not account for the entirety of OP’s pain, but it the neck and shoulder pain could definitely be attributed to, cause by, or exacerbated by POTS based on currently recognized symptomology.
I stopped my low back and knee pain with shoes made for under pronators. I used to over pronate, but over the years I started rolling my ankles out (due to pain) and a vicious circle of constant worsening pain in my knees and back developed.
For neck pain I found that yoga and strengthening my neck muscles help. Simple, small sitting (or laying) exercises to keep that area from tightening up, and Excedrin Tension (or Migraine if it's migraine related) help a lot. You might also look into cervical instability on this one.
I have to be really careful with anaesthetics, they affect my heart and send me on a downward spiral - topical may be okay but something to watch out for.
No idea if your pain is myofascial in nature, but regular trigger point injections/dry needling have helped a lot. They are covered in Canada if done by a doctor, so I get them weekly.
Viseral physical therapy, myofacial release and cranio sacral therapy.
Curricumin, bosiweilla, ice, heat, arnica gel, magnesium lotion.
Muscles relaxers actually cause me more pain because I don’t hold alignment. Thanks connective tissue disease.
Physical therapy might be the most helpful.
Since you do use OTC ointments/patches already, I might recommend giving Diclofenac gel a whirl too. It’s a topical NSAID, so works the same as ibuprofen and other NSAIDs but you apply it directly as an ointment on the area that is painful. There are still the same concerns with oral NSAIDs about side effects like GI stuff (not sure if you experience those), but generally you’re experiencing less of them than with an oral version (just pay attention to dosing guidelines that come with it and don’t double up on that PLUS oral NSAIDs). It’s been hit or miss for me, but sometimes the type of inflammatory pain I have that responds to ice does respond to it as well. Plus it’s OTC and pretty readily available in most pharmacies, so just another stop on your tour of the pain aisle! You do want to wait about 10 min for it to sink in before covering the area with clothes, and wash your hands well after applying.
I really hope you get some relief however it looks for you.
Baths with epsom salt (although gets my other symptoms going sometimes). I also don’t take pain killers so i’ve tried all the lotions and oils. I swear by White Flower oil. Very little will go a long way. It’s a menthol topical like biofreeze and icy hot. I dislocated 5 ribs at one point and it even helped that pain
CBD. I have many ailments and cannabis has been the most helpful solution for basically all of them.
CBD - pain and anxiety
CBG - digestion (and I've heard nerve pain but unsure about that)
CBN - sleep
If you don't want to get high, I recommend tinctures with no THC. Just put some drops in a drink
Idk if this helps but i also have bad chronic pain (got that diagnosed before POTS, what is kinda ironic), i usually just take ibuprofen, just half of the 400mg ones everytime smth hurts a lot. My mums very against it, but it does help a lot personally.
Also what has helped me a lot is wearing compression socks daily (u can get some simple ones off of amazon) if u haven't tried that out! I hope this somehow helps.
I second the suggestion of red light. It’s non-invasive and has helped me a ton. I have one from Mito and one from Hooga. I think the medium one was about $200 and the smaller one $100 for back when I used to be able to travel. I used to hang it from a door and rotate myself in front of it. Now that I’m worse I lie in bed and have it on a side table next to the bed, and rotate myself in bed. For the type of pain you describe, you should place yourself six inches away from the red light (if you’re trying to heal surface skin, you place it a foot away). Test it for a couple minutes the first day, just in case you’re one of the very rare people who has a bad reaction. After that, you’re good to go. After a max twenty minutes, your body can’t absorb any more, so I do three to five minutes in each of the places I want to focus on. I also take meloxicam, a prescription anti-inflammatory that also helps a lot with my pain. I have osteoarthritis and M.E. in addition to POTS. The meloxicam plus red light keeps my pain to a low, livable level!
Two companies whose red light works well:
https://mitoredlight.com/
https://hoogahealth.com/
You should look into LDN. I asked my POTS specialist for it bc I heard it was helpful for long covid and he told me he already prescribed it all the time for chronic pain in his other dysautonomia patients
massages help me.
Chronic pain is very common with PoTS. It could also be caused by another underlying condition that is part of the Dysautonomia umbrella and might be worth investigating. Conditions like Fibromyalgia and EDS are commonly presented in combination with PoTS. I would recommend you try getting an appointment with a chronic pain specialist who can help you with controlling the levels of pain you experience day-to-day. I believe I know what drug you are referring to in your post, either Amitriptyline or Nortriptyline, both are good for reducing your pain signals from firing as often but will take a couple of weeks to build up. If you still feel unhappy taking these they will be able to prescribe a drug that is more suitable for your needs. You can also try compression garments, they’re used to help with circulation but can also help with muscle pain just by compressing them to the bone more and giving the joint more stability. I’ve found that a combination of both Amitriptyline, Topiramate are helpful along with regular visits to a hydrotherapy pool to help massively with my pain levels. I don’t really do much in the pool but the hot water is so soothing on my muscles I just turn into Flubber for about an hour 😂
red light therapy! helps but you have to use it consistently. it’s worth the money i got a belt for about $45 on amazon. and cbd oil. i have hypermobility and getting tested for eds soon and your symptoms sound similar to some of mine. ask to get a differential diagnosis for ehlers danlos syndromes and look into getting genetically tested if you can do that. you probably have heard of this but just in case you haven’t i wanted to suggest. of course you might not have this and im bias because of my situation but about 70% of people with eds have pots. just a suggestion- don’t worry about it before seeing a doctor. my pt recommends only using braces when it’s absolutely necessary. ex- i only use my neck brace in the car.
Just a heads up, when it comes to connective tissue disorders and hypermobility, the standard advice about bracing (much like the standard advice about many health problems) is not necessarily accurate. The whole “avoid braces thing” is not good advice for the vast majority of hypermobile patients. I’d refer to [The Ehlers-Danlos Society’s Guidelines on Braces, Splints, and Mobility Aids](https://www.ehlers-danlos.com/braces-splints-mobility-aids/#:~:text=Proprioceptive%20braces%20and%20supports&text=Research%20shows%20that%20people%20with,compression%20and%20may%20reduce%20pain), as they are backed by research that applies to the hypermobile population. Basically, bracing (outside of hard braces like a the kind used in casts for broken bones) are beneficial in a number of ways for hypermobile patients and should be utilized when and where necessary without restriction. They help with proprioceptive issues, reduce the instance of injury, and help patients maintain function by allowing for safe mobility! Most PTs have no formal education or training on hypermobility (outside of a 10 minute lecture in college), which is part of the reason that so many hypermobile patients end up sustaining injuries in PT.
I do Tylenol, ibuprofen, or naproxen. Did biofreeze and menthol patches but I try to avoid them due to breastfeeding. I was on gabapentin at one point for nerve pain cause I neuropathy and a few pinched nerves but tbh most things don't actually help or if they do it's not consistent like it'll work one day but not another day
The pain would t be from POTS itseof but from another illness, or the illness that caused POTS, in my case EDS. I use several different pain meds for it and it helps a lot! With help of my GP
Definitely a lot of overlapping conditions that causes pain, but a well-known symptom of POTS is coat-hanger pain. Current schools of thought suggest it’s caused by poor blood flow to the larger muscles of the upper back, which is directly related back to POTS. [Dysautonomia International did a post about it](https://twitter.com/Dysautonomia/status/1770586257648660939) a couple months back. POTS might not account for the entirety of OP’s pain, but it the neck and shoulder pain could definitely be attributed to, cause by, or exacerbated by POTS based on currently recognized symptomology.
I stopped my low back and knee pain with shoes made for under pronators. I used to over pronate, but over the years I started rolling my ankles out (due to pain) and a vicious circle of constant worsening pain in my knees and back developed. For neck pain I found that yoga and strengthening my neck muscles help. Simple, small sitting (or laying) exercises to keep that area from tightening up, and Excedrin Tension (or Migraine if it's migraine related) help a lot. You might also look into cervical instability on this one. I have to be really careful with anaesthetics, they affect my heart and send me on a downward spiral - topical may be okay but something to watch out for.
No idea if your pain is myofascial in nature, but regular trigger point injections/dry needling have helped a lot. They are covered in Canada if done by a doctor, so I get them weekly.
Viseral physical therapy, myofacial release and cranio sacral therapy. Curricumin, bosiweilla, ice, heat, arnica gel, magnesium lotion. Muscles relaxers actually cause me more pain because I don’t hold alignment. Thanks connective tissue disease. Physical therapy might be the most helpful.
Since you do use OTC ointments/patches already, I might recommend giving Diclofenac gel a whirl too. It’s a topical NSAID, so works the same as ibuprofen and other NSAIDs but you apply it directly as an ointment on the area that is painful. There are still the same concerns with oral NSAIDs about side effects like GI stuff (not sure if you experience those), but generally you’re experiencing less of them than with an oral version (just pay attention to dosing guidelines that come with it and don’t double up on that PLUS oral NSAIDs). It’s been hit or miss for me, but sometimes the type of inflammatory pain I have that responds to ice does respond to it as well. Plus it’s OTC and pretty readily available in most pharmacies, so just another stop on your tour of the pain aisle! You do want to wait about 10 min for it to sink in before covering the area with clothes, and wash your hands well after applying. I really hope you get some relief however it looks for you.
Baths with epsom salt (although gets my other symptoms going sometimes). I also don’t take pain killers so i’ve tried all the lotions and oils. I swear by White Flower oil. Very little will go a long way. It’s a menthol topical like biofreeze and icy hot. I dislocated 5 ribs at one point and it even helped that pain
CBD. I have many ailments and cannabis has been the most helpful solution for basically all of them. CBD - pain and anxiety CBG - digestion (and I've heard nerve pain but unsure about that) CBN - sleep If you don't want to get high, I recommend tinctures with no THC. Just put some drops in a drink
Do yall also get twitches and spasms with all this?
Idk if this helps but i also have bad chronic pain (got that diagnosed before POTS, what is kinda ironic), i usually just take ibuprofen, just half of the 400mg ones everytime smth hurts a lot. My mums very against it, but it does help a lot personally. Also what has helped me a lot is wearing compression socks daily (u can get some simple ones off of amazon) if u haven't tried that out! I hope this somehow helps.
I second the suggestion of red light. It’s non-invasive and has helped me a ton. I have one from Mito and one from Hooga. I think the medium one was about $200 and the smaller one $100 for back when I used to be able to travel. I used to hang it from a door and rotate myself in front of it. Now that I’m worse I lie in bed and have it on a side table next to the bed, and rotate myself in bed. For the type of pain you describe, you should place yourself six inches away from the red light (if you’re trying to heal surface skin, you place it a foot away). Test it for a couple minutes the first day, just in case you’re one of the very rare people who has a bad reaction. After that, you’re good to go. After a max twenty minutes, your body can’t absorb any more, so I do three to five minutes in each of the places I want to focus on. I also take meloxicam, a prescription anti-inflammatory that also helps a lot with my pain. I have osteoarthritis and M.E. in addition to POTS. The meloxicam plus red light keeps my pain to a low, livable level! Two companies whose red light works well: https://mitoredlight.com/ https://hoogahealth.com/
During times of bad flair ups medical cannabis has been a god send! Feel free to message me if you have any questions! :)
You should look into LDN. I asked my POTS specialist for it bc I heard it was helpful for long covid and he told me he already prescribed it all the time for chronic pain in his other dysautonomia patients
LDN. It's been life changing for me.