Finally, have my appointment next week. I’m currently just taking Citalopram 20mg and Ibuprofen and Codeine and co-codamol as needed. I find the Co-codamol gives me terrible rebound headaches but Ibuprofen and Codeine (Neurofen Plus) weirdly does not. Codeine also affects my sleep badly. It sometimes makes me feel wired and makes falling asleep or staying asleep difficult. Although the muscle relaxing effect really helps with my pain, itching and restless legs sometimes enough to help me get to sleep. I know that’s confusing. It is for me too. I tried duloxetine a while back and had horrendous night sweats that soaked through to my mattress. Had to change clothes around 3 times a night. I also tried amitripyline which gave me constant headaches and drowsiness. But at the time I was studying for exams so couldn’t tolerate it. I wonder if anyone has had these side effects and they disappeared over time. I know citalopram made me feel terrible at first but I persevered. My biggest issues are pain, of course (especially in my legs and back), migraines and headaches, restless legs and sleep. My pain is usually not at the level that many of you on here suffer but it severely affects my mobility because my leg and back pain make it impossible to walk far when I’m having a flare. I don’t feel like I need everyday strong pain relief just something that helps during a flare. I feel like I’m not making myself very clear. I just don’t want to waste this appointment that I’ve waited 2 1/2 years for. I’m also so scared of trying new meds because of all the side effects I’ve dealt with from trying all the different migraine meds in the past. Weight gain is also a big issue because I’ve gained 4 stone is the past couple of years through being ill. Sorry this is so long. If you’re still with me I would appreciate any advice.
Chronic Pain Pharmacist Appointment. ... - Fibromyalgia Acti...
Chronic Pain Pharmacist Appointment. Meds advice please.
Not sure if you are UK or not or can get to London, but sounds to me like a referral to the Fibro Clinic at Guys and St Thomas's Hospital would benefit you. One stop shop, see all the different specialists on the same day and they then put together a plan and send it to your GP. I saw physio, psychotherapist, rheumatologist and one other, sorry can't remember who she was! I blame the fibro fog😂
Fibro has to be good for something and the only thing I've found is blame the bad memory on the fog😂
Other fibro clinics are available countrywide but I can only speak for the Guys one as that's the one I used. Had to fight the GP to get a referral but it was worth it.
Sorry I obviously didn’t explain myself very well. My appointment is with the specialist pharmacist at the Chronic Pain Management clinic. I am on their programme for Fibromyalgia. I was looking for meds advice about what has worked for sleep and pain relief for other people with similar issues.
sorry I misunderstood but the one stop shop would have sorted meds for you. I can’t take prescription meds so rely on other pain relief as many contributors on here find too. As fibro is different for all of us what works for one many not work for another and many find prescription drugs don’t always work for extended periods of time. It’s tricky and time consuming finding a combination that works.
Agree Guys clinic was amazing. I was lucky as worked there and one of the consultants told me to get GP to refer, then saw me. He was head of rheumatology and then called the fibromyalgia clinic and booked me in for following two weeks. Like you I saw the lot and got meds I needed etc.
Lots of us don't take any meds for fibromyalgia because they are ineffective and ultimately bad for you long term, you may find that's the case for you too I'm afraid.
Yes I was going to add that comment too.The side effects can change every aspect of living so life becomes unbearable ...
I live by pacing/rest and more rest...
It's no cure but living with the pain and fatigue can be managed if all tasks are broken down to simpler units bt standards have to be lowered...
Learning to accept fibro limitations is not easy but we all have to work towards that goal just as we have to learn to adapt to aging...
Enjoy what you can, when you can...
I've just had a summer of depression (unrelated!) and that pain, in my opinion is intolerable. I now count my blessings despite the limitations of fibro...
I wish you well xxx
And anyone else suffering with depression on top of fibro...
I haven't bn able to write here on the forum for months but just reading is so supportive... Thank you xxx
Migraine is the only time I turn to imediate medication!I feel for you if you too suffer with regular headaches and migraines! My meds hv to dissolve under my tongue and probably reduce a migraine effect from 36hr to 24hrs! Not ideal but I always travel with them... xxx
I seem to collect chronic pain conditions, it's like each one has it baby! I think it was Chronic Migraines that gave me Fibro which then gave me IBS which then gave me Bladder Pain Syndrome. Mind you I think it may all be caused by insomnia which I only found out at the glorious age of 46 was probably all caused by undiagnosed ADHD 😂. Still you live and learn!!
Yes I think my fibro was caused by migraines topped off with endometriosis. I’ve never known pain like endometriosis. It was scary. Had all my lady parts removed 3 years ago followed by surgical menopause. It took me s couple of years to feel normal again but unfortunately left with fibromyalgia. Are you on any meds for ADHD? I’m certain my partner has it. The symptoms have caused him so many problems since primary school and still do. I’m wondering if a formal diagnosis would help him xx
No GP says its a 7 year waiting list in Cambridge for a diagnosis, without a formal diagnosis you can't get access to medications. We only discovered my theoretical ADHD while trying to get my 9 year old daughter assessed, the waiting list for kids in Cambridge is 5 years, so she can't get access to meds either. We're looking into getting a diagnosis privately for both of us but we're talking thousands, maybe £4000 for both of us to accessed. I'm 100% sure I have female ADHD I seem to be textbook, it's crazy, I was in tertiary mental health care for 10 years can't believe they didn't spot it then, but female ADHD didn't really exist as a concept 10 years ago....
I used to work in a primary school in a not wealthy area. Some of the parents did pay for a private assessment because of the waiting list. I’m certain it was less than £200 so definitely worth shopping around. I know some of the psychologists we had in school also did private work. I’m in Merseyside so nowhere near you unfortunately x
Yes my friends kids who went private 4/5 years ago paid about £300 and £200 for meds. Sadly the ADHD world has exploded since then, particularly since they've started recognising female ADHD, Cambridge has 4 times the national average of ADHD cases. There are so many dodgy practitioners out there GP's are refusing to accept private diagnoses. This means they won't take over the meds prescriptions so you would be forced to pay at least £200 a month, so £400 for the 2 of us, potentially for ever. The GP will only accept diagnoses from NICE guided practitioners and they cost about £2000 each. The dodgy ones cost about £1300ish anyway. So we've tried the nhs route but after a year of waiting I've don't want my daughter to only get access to meds when about to sit GCSE's. So what can you do 🤷
Thanks. I suffer with anxiety and moderate depression. I tried to taper off my citalopram this summer because I’ve been on it for years. Even though I did it really slowly my anxiety came back along with anger and paranoia after about a month after reducing my dose. Hate being dependent on meds but they make a huge difference. Hope you’re doing better now xx
Thank you... xxxMy life has a few more distractions now so it's a tad more interesting to bear... However, I rest all the time and need baths for warm rest! When I stop now I'm bloody exhausted+so sleep a little better rather than focus on 110% dismay. It's a balancing act as always but luckily I can afford a cleaner so I am v fortunate indeed.
I count my blessings and wish you well with a deep comforting hug xxx
Depression needs all the help we can find...
Waving to you and I do understand your angst xxx
HiThere's not many meds out there that are effective for Fibro. Unfortunately it is usually trial and error. What works for one doesn't work for another. I was on Naproxen, co-codamol, gabapentin, Citalopram. I don't take co-codamol or gabapentin any more. Listening to other people codine doesn't work for fibro, however they say Naproxen doesn't work as its not an inflammatory disease, but it works for me. I just take it when I need too. I also take Omeprazole as you need to when taking this sort of medication.
I'm sorry can't be any more of a help. I really hope you find some relief in your pain meds and they can help you. Good luck. Big comfy hugs
Lily x
Thanks. I find ibuprofen plus codeine is really helpful for my leg pain at night. I didn’t take any last night and the pain woke me several times. I’m told I do have arthritis in my knees, spine and fingers but apparently not enough to cause the amount of pain I suffer but maybe that’s why the ibuprofen and codeine helps.
Hello Brigga.
I am sorry to hear about your struggle with meds. It really sounds like a pain relief cocktail. I had Duloxetine when 1st diagnosed with fibromyalgia three years ago. It turned me into a zombie even on the lowest beneficial dose. I also used to get ‘brain zaps’, the most frightening explosions in my head (sounds crazy I know) but they are documented as a side effect of this medication. To be honest once I came off them I felt like the ‘normal’ me again, other than having to deal with symptoms again. Coming off them was slow and hard but so pleased I did. They made me so sleepy that I just couldn’t function and I ended up weighing up the pain against zombie life and chose to try other ways of tackling the pain.
It took a couple of years and lots of home trials of alternatives: CBD - didn’t notice any benefit. Magnesium - personally I swear by this as I know if I miss any I can feel symptoms worsen. Yoga - great if you can summon the energy and can cope with the after effects next day. Pacing - this has been difficult to learn but I now know my signs of flare and am able to pull back to recoup.
I am a nurse and still work full time in a very demanding role and find that I get very quickly emotionally drained so have to plan time out to stop and take stock so that I can get through the shifts. Over stimulation can really knock me out. I guess my fibro is mild to a lot of people but a flare is awful just the same. I now don’t take any regular meds other than the high strength magnesium daily with paracetamol for joints, muscle pain and headaches. Exercise is hit and miss and ‘well’ days are highly valued and enjoyed regardless of the burnout later! I have recently re-started on HRT and I believe this has also helped me. Brain is still mush but limbs feel better than they were!
Not sure any of this will help you, but I wish you well in your quest for a comfortable life ahead.
Thanks. I may try the Magnesium. I tried it in the past but I think I bought ones that were too strong for me and they gave me upset stomach. I’ve had no benefit from over 3 months on CBD oil. I suffer worst with my knee joint. Acupuncture worked amazingly for that but unfortunately not available on the NHS. If I manage to get PIP I will definitely be paying for another 6 week course with some of the money.
HiHave you tried the magnesium spray oil. My husband uses this as he osteoarthritis in many of his joints.
Really hope you find some relief soon.
Love and comfy hugs. X
I haven’t. I’ll look out for some. Thanks x
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