The pain ladder and medication. Cocodamol does zilch.

[TianneD28]

So I'm on 30/500 2 pills a day 4x a day. I have EDS, instability of lower limbs, a joint deformity in my hip and a labral tear in the same hip along with chronic spine pain in the entire length of my spine and gastroparesis so I hurt all the time. *fun*

Been on cocodamol for maybe 2 years now, before that was naproxen and before tramadol but they didn't work either. My pain is getting worse as the weather changes and I'm at the point I don't leave home or even my bedroom most days because I'm in so much pain. Sometimes Drs are like oh you're under this and that doctor wait until you visit them again but they aren't hearing me when I say that doc has said speak to the GP because the GP deal with me more so they don't wanna prescribe me something and I don't see them for another 6 months and if the GP changes it then they can't make any headway on how my treatment is going, so let the GP and myself discuss together contact the specialists let them know and at least if I have to change meds it's via my own dr and I'm not left waiting ages to see a consultant again.

I'm going to see a GP on the 6th December but I get the feeling I'm going to be fobbed off again, there's been times they're like oh let's lower your dose to LESS THAN HALF of what it is and see how you get on -.- one doc was like how about some paracetamol? Yeah I tried that from 2009-12 it didn't work why do you think I was given stronger pain relief? Is there any recommendations anyone can make that I can speak with my dr about? Fed up of everything hurting all the time! I'm 21 and just want to live a normal-ish life where I'm not aching all the time or unable to do things for myself because I'm in so much pain. I can't even shower standing anymore, I can only go up like 3-4 steps before my legs are in pain, even typing this now my arm is killing.

I have hospital letters that speak about chronic severe pain in all joints, to avoid standing for long and other things that exacerbate my symptoms. But because docs see "oh she's of a good weight and doesn't look sick she's feeling fine" no I'm not feeling fine, my concealer is working wonders and I have to force myself to get errands done soon as so I'm not stuck in public curled up I a ball when the pain train hits me out of nowhere -.-

Also tried celecoxib and amitriptyline but pots and gastro issues means those are a massive no go for me

[Silvergilt]

Ugh, it's frustrating. The issue of course is the ZOMGADDICTION in their guidance which essentially sees anyone with a chronic illness as a potential drug seeker.

What I've done is I go in without makeup or anything else. I don't wear my 'public face'. Then they see EXACTLY how I feel. Also, it would be worth perhaps getting your specialist to inform the GP office that pain medication does NOT work the same on EDS. I had no idea about this myself - taking cocodamol and codeine is like eating Smarties for me, personally, they do absolutely nothing. And there's zero point in the 'antidepressant/sleep' dosage as that does nothing for me either. For me it's opiates or I may as well not bother, but it took me seeing another GP in the practice before I finally got through to someone. If possible you might want to consider seeing another GP in your practice. The new GP I see prescribes me tramadol but I have to be careful the other GP doesn't fill out the scrip (it's a prescribing surgery) as he always cuts the dose by half and sticks and bunch of 'controlled substance' stickers on the bag just to be sure I know I'm a potential addict. Charming fellow...

Good luck!

[Hidden in reply to Silvergilt]

Have you asked for a referral to the pain clinic? I have EDS too and found that they very helpful and take your pain more serious than any other doctor. Hope you get the right help x

[Silvergilt in reply to Hidden]

Honestly there isn't anything a pain clinic can teach me; I did all that when dx'ed with fibro and even my specialist admits I probably know as much as the clinic specialists. All I need is someone who doesn't think 'addict' when I ask for a scrip

[Hidden]

Sorry I thought that you said that your meds are not working. The pain specialist is much better at getting the right cocktail of drugs for you than a gp can and has lots of other tools; injections, patches, psychological support on how to live with pain, pain physio, needling etc.

Sadly pain meds are not designed to take all of the pain away, it's a good result if they lower the pain by 30-50% (sadly we are still waiting for a miracle pill to be developed)

GP clinics are really trying to cut down on prescribing pain medications. Hope you are getting the help you need and that your GP will be helpful next time you visit

(I had some good results on my back and hip with dry needling and injections)

I know it's really hard to find a good consultant for EDS

Hugs

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