At present I am not on any painkillers. I was on Co-dydramol, which my GP suddenly took off me, not sure why. So without anything to take the edge off the pain life is a living nightmare. I was wondering what painkillers, if any, your GP has tried you on for FM. It might give me some idea for when I go begging to him on Monday
xxxxx
I have tried quite a few over the last year or so. I am now on pregabalin, amitriptyline and duloxetine. This combination has been the best so far but I am aiming to reduce them after my sessions at the pain clinic, fingers crossed! Bit. naughty of your GP to leave you without anything to help!? Jane x
Hi Jane
I would try anything right now. I was in bad pain when I woke today so tried three(yes three)paracetamol. I was so desperate for the pain to ease, not necessarily stop, but just ease. I did a few odds and ends around the house, nothing much to party about, and I made things ten times worse and now I am exhausted. But I have never been told if I have CFs or not. So I may push for a rheumy appointment, have seen no one since I was diagnosed just over 22 years ago. Rheumy discharged back to care of GP all those years back. I know I have to go for physio and that is just sending me in circles as I have been there before and they said they could not help and advised GP to refer to pain clinic, I never got referred. But today I am really feeling it, more so than usual. Hubby has been fab and done all the floors for me and made a start on all the dusting(he collects ornamental birds by the hundreds)and I am fearful of dusting them as I broke two last time and they are very valuable, he has paid thousands for them all. Wish me luck for the GP tomorrow xxxxx
Best of luck tomorrow. You defo need to try something new as not good to take 3 paracetamol (done it myself when desperate though). Some GPs don't offer pregabalin as it is expensive. I got mine when the pain clinic reviewed my medications. Will keep fingers crossed that your doc is helpful. J x
My GP is normally pretty good and has always treated me well, I just do not understand him giving me nothing at all. He is always telling me with Fibromyalgia I can expect a lot of pain and he understands how much pain I am in at any given time, but nowt to take is making things far worse. If I have no joy I will get physio to stress highly this time that I need to go to pain clinic and we can take it from there. But last time I was discharged after 2 visits! I hate taking pills as I am having to take so many right now due to other illnesses, but I would give up everything else just to get some respite from the pain of FM xxxxx
That should have read just over 21 years ago lol not 22(I was thinking of my daughters 22nd birthday on Tuesday at the time of replying)
I was on codyramol for 20 years ... Not constantly only on really bad days... Other times ordinary paracetamol would do... Then when fibro got worse .... Yes it does despite the medical proffession disagreeing. Suddenly co dydramol took away the pain BUT gave me a migraine like headache.. Went back to my gp and he put me on dihydrocodeine... Well the dose says 1or 2 tabs up to four times in 24 hours..... Half a tablet works for 6 hours and I feel nicely drunk and pain free max I take is 2 halves a day... I wonder if that would help
VG xx
I used to get 100 co-dyds a month, could take up to six a day, but I never did so they lasted me, so I was not over doing it with them. I have had dihydros too, they worked for about 6 months lol, and then things worsened. The way I look at is if they think it is caused by a chemical imbalance in the brain, which they cannot measure, then eventually the brain will adjust to what you are throwing at it in the the way of pain meds. And I think we all go through that. I have had diclofenac twice since being diagnosed, I tiold them the second time they would not work lol. I have been on indomethacin too. Also been on Amitrips and dosulepin. Thankf for the advice xxxxx
Hi there,i take 75mg 3 times a day of preganalin
100mg of Amitrityline at night sometimes slow release diclofenac,co codamol 30/500mg ,doc also gave me morphine as i had had pain for years i tried it and it made me really angry so i dont take it.I have to say the pregabalin have been a godsend,hadnt slept properly for 6 years,now i dont really wake because i dont ache all night,i feel so much more refreshed in the mornings.Hope you get some relief when you see your doc.Take care,sandy.
The only two I have not tried from your list is morphine and pregabalin. I have stomach and duodenal ulcers so I am wondering if this is why my GP hestitates. But I would rather give something a go and possibly have to have extra meds to stop any stomach problems being caused. I will see what he says tomorrow xxxxx
pre-gabelin and paracetamol.
used to have miloxicam/mobic too which was very good but had few stomach probs so it's stopped.
regards,
sandra.
Miloxicam, that rings a bell, I think rheumy tried me on that when I was first dx. Not tried pregabalin. A few members are mentioning that. Oh and I have also tried the recommended Tramadol too, they may my skin feel like ti was crawling xxxxx
Maybe as you say your doctor cam give you something to take for your stomach also ,i am so glad after six years of not getting a good sleep , due to the pain all night long,i finally can sleep without waking on and off alllllllllllllllllllll ! Nigjt.
And i. also have much less pain in the day time also.
Hope you get some much needed relief,bless ya.sandy.
Well I hope so xxxxx
Ive had this now for 15 yrs and probably longer but initially it was blamed on loose ligaments during and after pregnancy.I had 3 in 3 years and had bad pelvic arthropathy with 2 of those 3 pregnancies. it never really got totally better after the last girl who is 23 now but came back with a vengeance when i had another child 15 yrs ago..i was in a wheelchair within 11 weeks of getting pregnant the last time.I spent 4 months on and off mostly on in hospital whilst they tried to find out what was wrong.I had threatened miscarriage 3 times with last baby.Primary diagnosis is profound fibro and cfs.Im still using a wheelchair and cruthches and need a stairlift this last 8 years.It took 4 emergency admits just for pain control before my pain was really taken seriously.I started on lyrica and tramadol amytriptilyn,which i couldnt tolerate .I also took co codamol 30/500 strenght for 12 years.2 years ago i begged my G.P for something stronger,pain clinic had said well you are on co codamol we cant give u anything else???? 3 times last year i was admitted for uncontrollable pain ,each time i was treated with morphine injections along with my usual Tramadol lyrica and co codamol .Eventually one of the doctors having witnessed degree of pain i was always in took pity and precsribed me Butrans Patch.with tramadol lyrica at 600 mgs day and 8 co codamol 30/500 strength for breakthrough pain.This patch was increased 3 times and still pain was uncontrollable. i Was hospitalised a fourth time with uncontollable pain treated with large doses of morphine for 9 days and sent home onsame dose of meds that i went in with.?.. yep back to square one untill the next i went in .with in . ive been teatotal non smoker all my life by choice so it wasnt fear of addictions that stopped me getting the meds,it was something else along the lines of "oh were not going to go the patches route!" After being asked to give up my pain clinic programme place to another pt because i wasnt well enough to even attempt the regieme i then went back on the merry go round of uncontrolled pain, admit pain control ,released on same drugs etc...It was inhumane and cruel,i was willing to do anything if they would just stop my pain.On my brothers grave god rest him i would never swear a lie over him,my pain was 8/10 all the time every day ,every part of my body except my right neck,i thought i cant keep doing this im going to crack i was thinking suicide it was so awful my life was a pinprick of white hot burning grinding agony that made me grunt in pain far worse than labour ever did.and i had 4 natural births all 8 ils and up.The last one was only 5 ilbs because i was so unwell with the fibro unable to walk , iwas catherised because my bladder wasnt emptying of its own accord and my pain was still bad.so the baby was taken out by induced natural birth witha barely held together pelvis nearly 4 weeks too soon.The pelvic arthropathy meant i was strapped in big support straps and bedbound!I was glad i had older children because it was them that fed My son under strict supervision from me.I am a trained nurse by proffession or at least i was then.I then spent the last 14 years on the merrygo round.When i was really suicidal and crying every day dreading every hour for fear the pain would escalate as i knew it wouldI I threw the head up after hearing how another girl with fibro like mine told me she had paid a one off fee to see a consultant anaesthesiologist in his clinic to see if she could be given stronger drugs.This was successful for her she was approved and trialled on Fentanyl patch at low dose to be built up in three weeks time to 25 mcg per hour.he would write to her gp and see could it be precribed from her surgery from then on out.Her life changed that day ,not pain free but not desperate anymore either,and this gave me hope.I phoned the clinic on the lisburn rd belfast arranged an appointment for 3 days hense and as luck would have it i was in mortal dire straits the afternoon he saw me.His eyes near shot out of his head when he saw the state i was in and he was disgusted when my hubby told him my story over the years trying to get help.He asked him how long i had been in the level of pain that he was witnessing and my hubby said 3 years.He said to him u mean 3 weeks? And my hubby gravely said NO 3 years shes been in this pain.He wrote a no nonsence letter to my doctors my doc came flying down stairs all nice as pietook the script he had written me types it into the system and that was that and said ill get that sorted for you now from now on!????I was so greatful to the pain guy that it was the bedt 148 pounds i ever spent! Its still not quite right yet and is to be increased in 2 weeks but i suffered unbearable pain for 15 years!!!Ive been bedbound for 10 of those years .I only leave my bed for hospitals dentist and a monthly foot appt.This is the reality of the struggle we face for pain control.I have told my story not for pity but to demonstrate even wheelchair bound screaming in agony bp heartrate flying i still couldnt get the right meds until i paid PRIVATE.Think about it ladies and gents.Dont suffer and end up living in bed crying helplessly from pain.Oh and to give u a brief insight into the strength of my character I did olevels when pregnant with baby 1 took night classes with baby breast feeding in one hand me taking notes with other hand . then when preg no 2 i did same breastfeeding and note taking all at same time at back of lecture hall.i passed my olevels and started studying a levels to get into uni .My
3 Aa levels science subjects were completed again with baby 3 in the same way nursing baby under my sweater feeding and me taking down notes at the same time all to start a nursing degree as a mature 29 year old.First year of nursing degree i often had to run up to nursery and feed my last baby at lunchtime skipping lunch for me to play with her and let her know mommy wasnt far away.My Mom was Dead my Dad was alcoholic as was my sister so i was on my own.I did it it was hardest thing i ever did and i got the highest marks in 10 years of any nurse in all of the british isles including scottland wales and n.ireland! my papers and every single paper i did i got 90 minimum when 40 was a pass.Im strong mentally and nothing had ever been able to break me but fibro did so again and again .This consultant now treats me in pain clinic in the ulster.My G.P renews my scripts for my fentanyl patches and i spend my days still bedbound due to 2 bloodclot in my leg and post thrombolytic syndrome and asthma profound fatigue and frequent infection.I dont grunt like an animal any more.Its still more than i would like to bear on a regular basis but im sure if they increase it to 50 mcg/ hr as planned that i should be living with maybe 5 on a good day and 6/7 on a bad day.Not pleasing as such because pain is unpleasant t but i can cope with numbers of that range as long as meds take the edge of.Untill the doctors are taught more about fibro Mecfs they are going to continually refer us to people who cant help We are stigmatised for having this horrifically life altering monster and doctors prefer to dig their heads in the sand.New docs must come up through the ranks knowing latest research what pain can be like for severely affected people like me,im in top % 10 of people profoubdly disabled with fibro M.E and chronic fatigue,hashimotos ,blood problems anaemias, sjeouns syndrome, herpes simplex to face and eye and skin, trigeminal neuralgia ,trust me it goes on and on and i still self catherise few times a day.and it just goes on and on. I now get my patch provided by my gp using NHS and My Gp is ,guided by the pain guy who i paid for a one off consultation fee.If you are on the merry go round you could do worse than give my successful plan a whirl! each person is differently affected i know this but our pain should be treated according to severity and im sorry paracetamol ,brufen etcc doent even register!.i hope you can get an idea anyway of how hard it was for me to get sorted ,but i did get sorted in the end.Wish i had known 10 years ago i could have saved a lot of body function and suffered shed loads less pain.Good luck.I wont comment again as im totally wipes now.having spent another night unable to sleep.soft hugs to all
Sorry im only seeing this post now.Im off for emergency oral surgery at 12 ( dont ask!!) so i will just quickly tell you his name.Its Dr Mike Stafford.Hes a consultant anaesthesiologist Who works in the Ulster but also in the private clinic on the lisburn rd.Its called 321 or 231 clinic.i get the nos mixed up but it is a private clinicwith pain control appt.s He is quite thorough,bit abrupt but hes a busy man.He is caring though..Goodluck,im off to fight another battle!
Painkillers
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