Hi everyone I'm wide awake it's 3:40am but this is not unusual it's a daily thing.
I have still given up my meds 20 tablets plus oramorph was getting stupid. My GP was just upping the dosage every time I called them. Silly gps (4 of them at the surgery I've spoken to) why are they so uneducated? They have degrees after all but they are only general I suppose.
Consultant appointment in under two weeks trigger point injections they help more than the tablets but my mobility will deteriorate so much I may need the wheels back for a few days.
What is working for me at the moment :
I have found massages help with leg and back pain it costs me 30 quid every 2 weeks ( no different to buying my medication) but after a couple of days I feel like I'm walking better
Swimming!!! Cannot stress this enough this helps me so much I make myself go even with a flare up it doesn't matter if it's 4 length and the water is painful on the skin I can stretch out, use the spa and sauna. This has helped my movements - even my parents have said I'm moving a lot better.
Has anyone else stopped medication and uses alternatives?
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emjane4465
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It does sound as if you are managing your pain well. Well done you! I am having rotten trouble with mine at the mo.
I am trying to give up tegretol I was on 300 three times a day and I was so tired an stupified in the afternoons. Ao I had a chat with my GP and we agreed to try cutting it back over a month and then stopping. I now have pain levels that are reaching tens from other injuries namely my back but I am awake through the day not as forgetful so what do I do carry on see if there is an alternative what. I have the weekend to decide.
But you are mastering exercise as well so congratulation.
Hi. I too have been down the route you are now taking. I was there about 6 years ago. I eventually found a combination of swimming, Tai Chi and Yoga helped me tremendously. It took a long time to get where I wanted to be and I did end up on some regular pain relief but nothing like I used to be. I hope this helps.
Hi, I have given up all my meds, nothing was helping and I had bad reaction to everything. I am trying acupuncture and trigger point therapy at the moment, seems to be helping. I've had insoles built at the hospital to help with my walking. Recently I attended a three week pain management course at stanmore hospital in London which has also helped me. I work full time and for me coming off the meds was the best thing ever, not for everyone I understand that. I still have slow release tramadol when pain is pain, but pace myself, eat healthy and listen to my body. Try to rest when I can. Goodluck x
Hi, L. Crossby, I hope U don't mind me asking, but I was offered the pain management course at stanmore, I have fibro, back problems and arthritis, the pain is bad even on a lot of medication. I also suffer terribly with anxiety and depression, so when offered the pain course at stanmore, I had to decline because of my anxiety and depression, being away from home and around a lot of people. Which was sad to have to say no to. Please, would u mind explaining what happens at the course, what to expect, where u stay and anything u think might help me understand it better. I would b truly grateful.
I was a single mum at the time so turned it down for a year. My family said they would support me and I moved in with my partner. I decided last year the time was right for me to go on the course, it took 6 months for me to get a place. You stay Monday to Friday and go home at weekends. We did physio, swimming, OT, talks on pain, how to pace yourself. I would recommend it, I have fibro, CFS, back and neck problems and depression. It really helped it, being away from home is hard but you have the best physios in the country, it's only 3 weeks. I have learnt things that have helped me and my family already.
Well done emjane ..... It took me a while and hard work to find out the best treatment for me..I have myofasial release monthly , swim, meditate , regular blood tests for vitd levels , healthy diet avoiding foods I am intolerant to and for me very important a strict sleep pattern and of course pacing .Yes I still have bad days and fatigue then I will take pain relief and rest. But generally i feel the best I have in many years xxx
Has anyone got an air flow mattress? My gp was telling me to buy a temper mattress but I can't afford it. They were also telling me to up my amitriptilyne to 50mg per night which would mean id be taking it before I left work. My gp surgery which ever doctor I spoke to just wanted to up my meds constantly. I'm 21 and they wanted me on oramorph. !!! I don't go see them when i have another health issue now as they don't listen.
Please be careful with temper matress I spent money on one and yes they Re lovely but it don't help my sleep and you tend to get stuck and find it very difficult to move and turn as you mould to the mattress . So I am going back to a firm one. Lot of money to x x
Not sure you'd need to take it before leaving work - depends on timings, I have mine at 6 to 8 - when I remember! but bedtime would work except for the "Ami hangover". 50mg not huge. I'm on 40. Someone's on 100 with no probs, and someone else on 10 - (it's 150 or so for depression)
Im 'not allowed' to exercise at the mo as I recently fractured my spine (one vertebrae but WOW it hurts) so Im only doing gentle stretches (inc thoracis stretch v carefully as its a T4 fracture) showed the physio what im doing & he was fine with it. I started swimming again & it was agony (12mts ago!) & rheumy sent me to physio, they said I had good muscle tone but as I have hypermobility(1st I knew) they need to be stronger. I just had 2 sessions of hydro when I fell downstairs & fractured T4. I HATE the way all these pain meds make me feel & BOUGHT a brace (they didnt give me one at the hospital) - HUGE DIFFERENCE & I can halve the pain meds!!!
Previously I used massage, reflexology & yoga to manage the pain & meditation to manage my pain & hope to get back to that soon!!
Ive tried- had a breakdown attempted suicide. I have very bad depression, sometimes related to my fibro sometimes clinical. I have tried everything and now a combination of vits minerals pain meds and antidepressants keep me going. Theres a great powder think its called from fatigued to fantastic theres a book by same name and the formula contains up to 60 vits and minerals. Research the net. For excercise i walk my dog, i know swimming is good but i cant handle the rapid temp change. As for doctors - if i had the energy i would sue them, they think im an attention seeking hypo. Most frustrating is i would like to come off fentalyn and try low dose natroxene but as its not licensed at that dose in uk they wont prescribe. I have found out tho i can get privately. Its had excellent results for both tiredness and pain. Good luck!
Hi, I've just stopped all my medication about a month ago, wow did I suffer for it, but I feel more in control although still very forgetful. Felt the same as you after 14 years of medication just being increased all the time and no improvement, I seemed to be more intolerant of the pain the more medication I had. So now trying reiki healing and massage, this will be short term as it was a Christmas present and I can't afford to carry it on. just taking Thiamine 100mg for neuralgia a good multi vitamin, one muscle relaxant at night along with 2x Co-Codamol at bed time. Its early days, I am not sleeping well and the pain is all over my body, but I do feel more in control of it, my head seems to be clearing. I don't know were to go from here just going at it day by day and see what happens. I just know after the horrid withdrawl symptoms I had for 2 weeks there is no way I am going back on all those drugs, I am in just as much pain off them as on them, so they were not touching the pain but giving me other nasty conditions. I too would love some advice on how to manage, especially during flare ups without all the nasty medications.
Hi, I stopped my meds a year ago, I now manage the pain with a clear brain, I take co codamol twice a day ,they only take the edge off but enough for me to get by.
Hi, I wonder if you've come across Breathworks? The courses are aimed at people living with chronic pain. I trained with Vidyamala, the founder, and my mother, a sufferer of chronic fatigue and fibro has benefited from it hugely. If you look up Breathworks Mindfulness for Health you might find some more information if you're interested.
I sincerely hope that you are feeling as well as you possibly can be today? I think congratulations are in order for you! I genuinely hope that you can keep this up and live a happier and pain free life.
Please don't think I am mad, but was on Cymbalta aka Duloxetine for 5 years, coming off it very nearly KILLED ME. I now have a completely differing opinion of Pharmaceuticals. I am now using 2000 mg of Omega Fish oil to ease my joints 1 max strength St Johns Wort for Seratonin uptake. and my friends in USA send me Tylanol Pm for sleep. It is far from perfect but it works for me!!!
So wish I could swim, but even going in water if its deeper than my back side I end up with panic attacks, embarrassing big time. I am looking for some homeopathic remedies or essentials oils to rub into the sore points.
No but am heartened to see someone trying that approach.. l am at the stage of asking for a medication freeze and was wondering what alternative pain relief options will definitely try the swimming how frequently do you go?
CBD oil capsules work for me. Can’t stress how much they have changed my life or rather given me back my life. Check out good quality high strength ones like Healthspan. Don’t keep taking the pharmaceuticals as they don’t work & only create more problems as most discover eventually. The only ones benefiting from them being prescribed is them!
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