Advice Appreciated

[Givemestrength65]

Hey Everyone!

I was diagnosed with Fibromyalgia, joint hyper mobility and osteoarthritis nearly five years ago after my GP referred me to a Rheumatologist. Since then I have managed with medication and exercise. Sadly I feel like I’m fighting a loosing battle and am struggling with trying to keep my pain under control. I feel that since I contracted Covid in 2021, my pain has got worse. I currently take gapapebyin 300mg x 3 daily, amiltriptaline 10mg 1 at night and co codamal 30/500mg 2 times a day. I try to exercise regularly but am struggling. My Gp has said there’s nothing they can advise accept to increase my medication- I really don’t want to do this. I’m wondering if I should go down the private route and wondered if anyone has any experience of this and would they kindly recommend who would be best to approach. I live in London. Thank you so much for your time

[Blue-52]

hi, sorry to hear you are struggling, I don’t know where in London you live, and please don’t say, but you have lots of big hospitals there, have you thought, if you are thinking about going private, lidocaine infusion, I really don’t know if it works, or even if you can have it done on the nhs, it seems a few of the stars has this done, sorry I couldn’t be more helpful. Good luck.

[Givemestrength65 in reply to Blue-52]

thanks for your reply- I haven’t heard about lidocaine infusion but will have a read up on them. Many thanks

[Loobielu]

Hi, I've just been to see a Pain Management Consultant privately in Essex (only took 24hrs to get an appointment vrs the unbelievably long NHS waiting lists. Clearly money talks 😏! Ironically you can see this guy on NHS too!) . He has prescribed Duloxetine, high doses of some vitamins including 6000iu of vitamin D a day, gut health improvement taking apple cider vinegar, kombucha and kefir. Walking and yoga. I'm currently 4 weeks into treatment, no improvement yet but I've got to give it 3 months and then go back to him. Shout if you want anymore info. Best of luck with your journey and don't give up. We deserve to feel better X

[Dinkie]

You could request a referral to Guys and St Thomas's fibro clinic. One off appointment where you will see various people, including physio, rheumy, pyschologist and then they put together an action plan. I was there all afternoon. Took me 2 years to persuade my GP to send me and I only got the referral by putting the request in writing and following it up with a telephone consult and having a meltdown during that conversation. Very useful referral, in fact I cried during the time I was there as I could not believe there were specialists there who actually believed and knew what I was going through. The action plan was sent to my GP for her to action it.

[Givemestrength65]

Thank you for your replies Everyone… I will look in these suggestions. Many thanks 😊