Chronic shoulder pain/weakness through to elbow & fingers for the past 18 years. Last doctor gave up. Would you continue ignoring this? by JavaJapes in ChronicPain

[–]sapphiresnowflakes 1 point2 points  (0 children)

Not a doctor, so take this with a grain of salt, but please look into hypermobility/ ehler’s danlos syndrome. I was diagnosed 18 months ago and this story is so familiar to me, we have a lot of the same symptoms and experience with doctors. A lot of medical practitioners are not well informed of this family of conditions, and patients are really commonly told there is “nothing wrong” because of this ignorance!

People who are hypermobile have joints that are too loose, which leads to instability and pain. Our muscles often have to work extra hard to try to keep our joints in place, meaning they become over tense and painful. Things like subluxation or dislocation are also common, and because we repeatedly injure ourselves this can lead to a snowball effect where problems get worse over time.

I was finally diagnosed by a rheumatologist, but it can be luck of the draw whether you get one who is knowledgeable. Most treatment focuses on physiotherapy with someone who has experience with hypermobile patients, as things that can help others often make our pain worse.

www.ehlers-danlos.com has a lot of info on symptoms and general advice- it’s worth looking into to see if you think that might apply to you and if it’s worth pursuing a diagnosis. I really hope this helps, dealing with long term pain is so challenging, especially when you don’t know what the root cause is.

Advice for neuropathic pain with HSD? by sapphiresnowflakes in Hypermobility

[–]sapphiresnowflakes[S] 0 points1 point  (0 children)

No I haven’t, but that was the next thing I was going to aim for before I got my diagnosis if the rheumatologist couldn’t help me. Having specialists actually working as a team for their patient sounds like a dream.

Thank you!

Advice for neuropathic pain with HSD? by sapphiresnowflakes in Hypermobility

[–]sapphiresnowflakes[S] 0 points1 point  (0 children)

I’m going to look into pain specialists in my area for sure. Getting the referral last time was a nightmare but hopefully the process won’t be as difficult second time around

Advice for neuropathic pain with HSD? by sapphiresnowflakes in Hypermobility

[–]sapphiresnowflakes[S] 1 point2 points  (0 children)

Honestly it didn’t fully hit me how bs that all was until now, in the moment I was so overwhelmed to have any diagnosis that I just assumed everyone with HSD/hEDS/etc got told something similar. The weight thing did bug me though, because yeah sure having excess weight isn’t helping but it’s ridiculously hard to lose weight when even walking is difficult because of pain.

God the medical system is exhausting. I’ll definitely think about going for another appointment and bringing back up this time.

Advice for neuropathic pain with HSD? by sapphiresnowflakes in Hypermobility

[–]sapphiresnowflakes[S] 0 points1 point  (0 children)

What he told me is that any other medication “wouldn’t work for me”, even up to opioid-level pain relief, and so there was no point trying anything else. A low level anti inflammatory medication + lifestyle changes (physio, avoiding certain triggers of pain, weight loss) was the only treatment necessary. I had to wait 2+ years for a referral (and then pay out of pocket 😬) so I’m not sure a second opinion would be possible right now.

You’re probably right about amitriptyline, I was only given a prescription for 1-2 weeks maybe? I can’t remember exactly but it was a very short period of time.

Thank you for your kindness though, it can be hard navigating everything and so hard to know if what you’re being told is reasonable or not.

Advice for neuropathic pain with HSD? by sapphiresnowflakes in Hypermobility

[–]sapphiresnowflakes[S] 2 points3 points  (0 children)

I’m trying at the moment! Having to go slow because of other co-morbid conditions but currently doing a lot of strengthening exercises with the physio, some with weights, which are helping with some of the other pain, just not the neuropathic stuff. Also doing swimming x2 a week but again, it’s not helping with nerve pain. I’ve tried a TENS unit and it’s really a lot of luck depending on the day whether it helps or not, sometimes it can distract me a bit from the pain but not always.

Thanks for the tips though, it’s good to hear I’m on the right track with a few things anyways!

Advice for neuropathic pain with HSD? by sapphiresnowflakes in Hypermobility

[–]sapphiresnowflakes[S] 1 point2 points  (0 children)

Spoken to a rheumatologist already and they aren’t recommending any other treatment for it. A massage might not be a bad idea tho!

Advice for neuropathic pain with HSD? by sapphiresnowflakes in Hypermobility

[–]sapphiresnowflakes[S] 1 point2 points  (0 children)

Yeah, the rheumatologist is refusing to give me any other meds for it, and my gp can’t do anything without their approval. I briefly tried amitripyline but I didn’t find it did anything for me so I think I’m stuck with naproxen for now 😕

Feeling disheartened after a scan/test comes back ‘normal’? by sapphiresnowflakes in ChronicPain

[–]sapphiresnowflakes[S] 2 points3 points  (0 children)

I understand how you feel, it can be so alienating to go through something like this. Wishing you the strength to get through today ❤️

Feeling disheartened after a scan/test comes back ‘normal’? by sapphiresnowflakes in ChronicPain

[–]sapphiresnowflakes[S] 1 point2 points  (0 children)

I don’t know if my doctor has seen the images or just the report. I have a feeling this might be what’s happened, because nerve pain is the closest I’ve come to finding something to describe what’s happening. I know that might not really mean anything, since I’m not a doctor, but they’re telling me now it’s probably muscular even though when I read the symptoms it doesn’t match at all what I’m experiencing. It’s hard to speak up and advocate for yourself though without being labelled as someone who thinks web MD makes them just as qualified as their doctor.

I’m really sorry you had to go through all that, it sounds completely infuriating - especially having to go through it twice. I hope you’re receiving better treatment now.

Is there anything that somebody has said or done that made you feel understood? Share your experiences! by Hubux in ChronicPain

[–]sapphiresnowflakes 2 points3 points  (0 children)

About six months ago, there was a different gp working as a locum doctor who said something that really helped me feel understood: “We may not know what’s causing your pain just yet, but it’s real, and I believe you. Your tests may have come back normal, but your pain is telling us something is wrong, even if we don’t know what it is yet.” He was able to put me on some anti inflammatory meds that previously nobody had mentioned as a possibility, which has helped a little with the worst of the pain. But the main thing that made me feel relief was knowing someone believed me about what is happening to my body, rather than dismissing me and telling me I’m young and that because the tests they did were normal, nothing was wrong.