Hypermobility pain relief advice?

Georgia_

I have Hypermobility and am looking into EDS at the moment too. I am 21 and was only diagnosed in 2019 so am still getting to grips with how to manage my condition. I struggle with work as I cannot find anything at the moment which does not aggravate my back but I am still working with GP's and specialists to try and get help with pain relief to allow me to continue work.

Georgia_

Does anyone have any suggestions for pain medication for when I have a bad episode?

I am currently told to just take 1 x 500mg of naproxen and 2 x 8mg of co-codamol twice a day. This has no impact on my pain and I am looking for something stronger or different but my GP has been reluctant to increase my dose or change my medication. I have not seen any addictive side effects at all which is great but I am still in pain and I need something to help me when I have to work. I use a heated back brace at work to help but I need a little more relief so that I feel capable to continue working.

poppy123456

Hi,

Unfortunately, we are not medical proffessionals and will not be able to give you any advice on what medication you should be taking. For this you will need to speak to your GP again.

Alex_Alumni

Hello @Georgia_ and a warm welcome to the community, to help our members share their experiences I've moved your posts into our 'Chronic pain and pain management' category. Thanks for reaching out and sharing a bit about yourself. 

I don't have experience of hypermobility or EDS myself, but do have to manage pain occasionally as someone with Cerebral Palsy. Perhaps you can continue to chat to your GP about the lack of impact you feel your current medication is having, and ask for their advice on similar aids (like your back brace) or additional pain management strategies to help. Do you have a pain management strategy in place with your GP? 

Please do feel free to explore the rest of the forum using our categories, and join in with any discussions of interest I'll mention our Work and employment category, in case you'd like to post in there. 

Let us know if you need a hand with anything, we're here to help

Alex

chiarieds

Hi @Georgia_ - I just wanted to add my welcome, as I too have hypermobility (the hypermobile type of EDS, aka hEDS). As mentioned above, trying to find effective pain relief is a discussion to have with your GP/specialist.

I do however remember reading that in some of those with hEDS, non-steroidal anti-inflammatory drugs (NSAIDs), such as Naproxen, are not always effective.

I can only speak from personal experience, that NSAIDs didn't help me, & at the time I tried many, as my GPs were trying to find out what might be helpful.

Unfortunately I haven't kept the link to what I read, but I've looked online today & found this comment, 'Non-steroidal anti-inflammatory drugs (NSAIDs) are one class of medications commonly prescribed for joint pain but can have a combative effect on joint health, due to their role in inhibiting the synthesis of collagen and articular cartilage synthesis. This can cause not only weakness in ligaments, but also in cartilage, tendon, and bone cells, contributing to an overall weakening of the joint.'  This is concerning EDS, which you can see here: https://www.caringmedical.com/prolotherapy-news/prolotherapy-ehlers-danlos-syndrome/

I admit I've not come across this site, nor can I vouch for it's veracity, but I do know, as I've said, that I've previously read that NSAIDs are not always effective in some of those with  hEDS.

I'm not promoting prolotherapy, as I know little about this, & altho much on this site is what I've read elsewhere, I also disagree for example with the video on Cervical instability in some with EDS.

Sorry I couldn't find a better link.

My current GP has said that pain relief in EDS is largely ineffective. I would concur; it's sometimes just finding a way to manage your pain. He used to look after the founder of our EDS Support group, so he understands EDS.

Georgia_

Thank you very much for this, I am going to go back to my GP and talk about if there are other options as I don't need pain relief all the time by any means, I just get to a point in the day occasionally where I do need a little something to help me continue moving and keeping my body active enough to reduce my pain as too little and too much movement cause me pain so it's about getting the balance right for me 

Unfortunately, in order to earn money the only job I can currently find causes me pain and I only do a short 4 hour shift but I need the money and so have to put myself through this pain until I can find something more suitable.

Libby_Alumni

Hi @Georgia_, 

I'm sorry to hear that you experience daily pain, as others have suggested, I think it's best to speak to your GP about other options and express that you feel as though your current pain management is not effective for your needs.

With regards to finding work and a role that is appropriate for you when managing your EDS, I think Scope's Employment Services could be really helpful for you. Scope offers a range of employment support services that are designed for working-age disabled people. Specifically, I think the Support to Work programme could be really beneficial for you.

If you decide to engage with the services, please let us know how you get on with them

Take care now and we will speak to you soon.

Libby

chiarieds

Hi Georgia,

I'm pleased you're going to discuss what may be helpful with your GP as they are in the best position to advise. I do understand the need to get the balance right between moving too much or too little only too well! This is obviously difficult for you, as work isn't helping pain-wise.

I don't know if you've looked at the Ehlers-Danlos Syndrome support website (it's also relevant as far as Hypermobility Spectrum Disorder goes too). There's some really good information in the GP's toolkit. Please see: https://gptoolkit.ehlers-danlos.org/     & do have a look around the rest of the site.

Great to talk to you, & I look forward to seeing you around the forum.

Georgia_

Thanks so much! Any help is as always appreciated.

Georgia_

Thanks @Libby_Scope I have reached out to Scopes employment support programme so will let you know how how it goes.

Tori_Scope

That's great to hear @georgia_! Definitely do let us know how it goes  

Georgia_

I have been to my pain clinic appointment and have been referred on to a pain management course and also to a rheumatologist to talk about heads which is great so I am looking forward to talking more with them.

L_Volunteer

Hi @Georgia_

Thanks for your response and for letting us know how things are progressing for you. How do you feel after your pain clinic appointment about going to a pain management course and a rheumatologist to talk about heads? I can imagine some relief at the sound of support but also some potential concerns 

chiarieds

Hi again @Georgia_ - that sounds like real progress. I'm sure the pain management course will help, &, as I know you're wondering about hEDS, I'm sure discussing this with a rheumatologist may hopefully give you some answers as to your hypermobility.

How are you getting on with Scope's employment programme? I hope you are keeping well.

Alex_Alumni

Thanks so much for the update @Georgia_ that sounds very positive, I hope you can feel more supported as a result, and that you'll be able to have some say over how you manage your own pain. 

Libby_Alumni

Hi @Georgia_, 

Thank you for popping by and giving us all an update with your situation - we really appreciate it!

It sounds like things are heading in the right direction and in no time at all, you'll be seeing various specialists and getting the information you need, to make informed decisions about your pain management. Do you feel more confident about your condition now moving forward?

Libby