Dr says my pain is in my head...I have JHS and already booked in for surgery (attached is a photo of my arthrogram... I'm just proud because I have a severe needle phobia and panic disorder... So when I was told I had to go in to have the needle done alone as it's done under x-ray, it was dangerous to have someone hold my other hand (nurse should have sodded off, she just sat at the base of the bee the whole time telling me I'm doing great why I'm internally imagining the Dr putting too much ink in and shoving my shoulder out n having to wait for my body to metabolise the ink before I can have my arm use back!)
Diagnosed after Dr reluctantly sent me to physio, physio said I'll have been born with it... Did some research and he's bang on. Had subluxations since I was 12... 20 years of almost daily shoulder subluxations, pain, insomnia because pain keeps me awake...
Heck, my lumbar is so bad I've shrunken 2 inches since my 16th birthday!
Came off pain meds whilst pregnant as they're opiate based, Dr said I did well without them so I obviously don't need them (no dear, I didn't leave my apartment for 9 months because I was in agony! And now the repeated not leaving apt has left me with agoraphobia, so pregabolin for that after breaking down in a full panic attack... He'd never seen one till then!)... So, no pain relief for 3 years, can't have paracetamol as it makes me sick, long term naproxen use gave me a dodgy left kidney and anaphylactic shock (same Dr, left me on them for 6 years without regular kidney checks... Cheers Doc!) so they're out of the question.
What can I do? A surgeon and a physiotherapist have both said my pain is not managed. Next nearest Dr is ages away, I barely get to this drs without freaking out...
Any advice on how to deal with this pleb? How he got his PhD is beyond me, I had to explain that hypermobility and joint hypermobility syndrome are basically the opposite end of the scales... One super bendy, the other stiff and painful!
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Fierymidget
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That Dr should be given the push,!! Could you go to pals and complain about him. I don't have this but know of people who have and they are in agony. Could you ask someone to take you to that surgery which is further away because you can't stay with this idiot,!!, Pm me if you need to, I'm happy to help and I'm s good listener. Take care. Love and hugs Lynne xxxx
I have hyper mobile hips it’s a very difficult thing and I had arthroscopic hip surgery 9 years ago. Then I got a bunch of other health problems laid up have no butt so my hip is acting up it’s hard to walk right and painful and I have a bad neck too from an accident. Hyper mobile for me due to weakness really hurts me more. .. I had a few pelvic surgeries too so not strong there so I get it.
I found going to the pool very helpful to have movement as it’s light on your body and resistance and it’s relaxing on the soul. I did water therapy. I got pool exercises for what I needed did them in there. Even with the 80 yr olds later to strengthen I could only do what they did. It’s better than nothing and it helped I think I went 3x a week. I took a lot of Celebrex and the had never in lyrica for awhile I didn’t like that one.
What about lyrica or gabapentin ? I’m so sorry. I really understand it’s awful and you clench from pain. Sometimes good old morphine is good for two days just to get a break from the pain and unclench.
There seems to be a back lash over EDS/HSD which may be ego related. For years doctors have been clinging to the idea that EDS was rare. But recent research has shown that it could be as common as 1/500 people.
This is a big blow to the medical profession. They have to accept that the 1/20,000 was based on a guess, not on research, and that they have been peddling that with no research to back it up for decades. Now they are told that they were wrong, in order to preserve their world view they have to counter that by denying that EDS and HSD exist or in some cases by denying that it is a condition that can have a big impact on daily life.
It might be that he won't listen to you, in order to preserve his ego. But he might listen to his fellow doctors that wrote the Toolkit. It might be worth a try.
Is there another GP in the practice, or can you find out when he is on holiday and see a locum? Sometimes it can help to have another GP go through things.
As for the pain, if they aren't going to help you with that then ask for a referral to a pain clinic. These clinics have changed and developed over the years and are becoming more skilled at dealing with this type of pain.
Hi, Naproxen didn’t help with my back pain. I got relief from Solpadine Plus, it’s over the counter and I tried so many others, I’ve recommended Solpadine to others and they’ve all had some relief 🤷🏻♂️
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