Hi I'm new to all this. Not formally diagnosed but I'm on pregabalin after seeing a pain specialist after an op for endometriosis failed to help my chronic fatigue and an attack of meningitis left me lots of fibro like pain issues. Im waiting to be referred to a cfs specialist team.
The pregabalin has helped a bit I haven't figured out pacing yet and am on a phased return to work. After just 2 days of increasing my work by an hour and I'm a zombie. I stupidly took an extra 50 pregabalin on top of my normal 100mg dose thinking it would ease the pain and knock me out like the early dose increases had but oh no I got the worst brain ache since my meningitis and was awake all night in agony with that as well!. And have had to drop right down again to feel normal 2 days later.
What else do people try to top up pain management when it flares up?
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Thanks, I had a go just alone in the swimming pool a month ago but seemed to react to the chlorine and made myself worse. I'm hoping things will settle further and perhaps I can have another go in the future.
My employer insurance is covering 6 sessions of pain physio and pain psychologist initially, then I will drop back into the wait list for the same people in the pain clinic.
Hi I alternate hot water bottle and ice for muscle pain.theres another drug gabapentin which may work better if you're not having much luck with prehablin have you asked to for pain relief ? Naproxen,codeine, tramadol etc...also look into amitriptyline I take 75mg at night for chronic pain syndrome and cfs. There's lots of options out there it's finding something that works for you. Ask to be refered to pain clinic if your gp can't help.
Thanks. I am getting on with the pregabalin and it does help, it just doesn't cut it at its worst. I can't take gabapentin or anti depressants due to other health problems and sensitivity to drugs in general and I'm reluctant to go down the opioid route, though admittedly i may have to as an emergency back up.
If heat helps try linnex, available on internet. Expensive but lasts ages. Very intense so use very sparingly, just a dab to start, give 10 mins and if not warm dab a bit more. It is my life saver!
As you have realised pregabalin is not the type of drug that you can just take an extra dose when you are in extra pain.
Tramadol is a recommended pain killer for fibro that you could take only when you need it for when pain is really bad. It's often prescribed along with paracetamol as both together work more effectively xxx
Yes, I might have guessed it was more like a anti depressant in that regard but I was obliged going up to the max dose and thought I'd habituated myself. It would have been useful if someone had warned me about that pitfall. Sigh.
I've opioids like codeine phosphate floating around from my op that I've never used as they made me nauseous and gave me constipation, not a good thing after bowel surgery.
I take extended release tramadol along with paracetamol & found 1 tramadol & 1 paracetamol works better than 2 tramadol. Some days I take 2 doses, some days 1 & some days I manage without so you can tailor it to suit your needs. I also take nortriptyline at night. I also do hydrotherapy, much better than a normal swimming pool as the water in the hydro pool is heated to 35 degrees - bliss!
I can't take anti depressants like amytripilene and nortriptyline due to other health problems and sensitivity to drugs in general but thanks for the suggestions.
Hi there i take the gabapentine along with morphine tablets and morphine patches as well as lidocaine patches and ammatriptaline. Again it doesn't take away Take away all off my pain but it does help. An when I'm having a really bad day i take CBD (hemp oil) . Mind you that tastes absolutely vile. I have a hot drink at hand too get rid of the taste quicker.
Start off conservatively and build up slowly. I wear knee sleeves which help when my knees are bad and they seem to work nicely along with ibuprofen gel. TENS machines are defo also worth a shot. People forget how effective paracetamol can be! I can't take codeine in any form so I start with paracetamol before escalating to other medications. Hope that helps.
I swear by glucosamine, coq10 and msm. All muscle, ligament healing vitamins, plus some good old vit c and d and magnesium
I also take a high strength cbd oil, i stopped taking all the western painkillers about year ago when my liver went into failure and i wont ever take all those drugs again.
It may seem like ur doin urself good but ur not, i was like a zombie, i had to be weened off the drugs as i was so addicted and i didnt realise till i got of them and actually started doin it naturally that they made me feel worse!
There lots of natural remedies. U just got to take enough to make a difference.
I've googled a little and it seems a hotly contested topic. Though I find it a stretch to believe 75% of the population are deficient. I'm not sue what NHS base their ranges on but I read too much is dangerous and that there is a close dependency on calcium and vit a and k.This report seems to suggest the 50nmol/l as a minimum adequate for my age range. Like on my sheet of results though no maximum ncbi.nlm.nih.gov/books/NBK5...
"For the purposes of ensuring public health in the face of uncertainty and providing a reference value for stakeholders, a prudent approach is to begin the consideration of the DRIs for these age groups with the level of 25OHD in serum that is consistent with coverage of the requirement of nearly all adults in this age range, that is, 50 nmol/L. Taken together with calcium absorption and BMD, and assuming a normal distribution of requirements, given no evidence that the distribution is not normal, a serum level of 40 nmol/L can be set as consistent with a median requirement. This modified approach is bolstered by—and consistent with—the relationship between serum 25OHD levels and calcium absorption, in which serum 25OHD levels of between 30 and 50 nmol/L were consistent with maximal calcium absorption. Based on these considerations as well as the intake versus serum response analysis described above, an EAR of 400 IU/day and an RDA of 600 IU/day are established for adults 19 to 50 years of age. These DRI values assume minimal sun exposure"
I saw a dietician and she is going to ask that I get vit d redone and also calcium checked which will be very interesting to see.
Well it certainly needs to be above 50nmol so current level is bad, but I've no idea what my optimal would be as the report itself says data is sparse. It mentions toxicity starting from 75nmol to 125nmol but the studies were on young men and I'm neither young nor male lol ncbi.nlm.nih.gov/books/NBK5...
Very curious to read more about why figures differ and why your article has seemingly such high figures. Seems an area where much bigger scale research is needed.
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