I suffer with ME/Fibromyalgia/arthritis etc.....my question is this. Does anyone have any experience if these medications and if so what? My GP mentioned gabapentin some time ago but after reading about this the side effects seem awful. There is also talk of weight gain, so reluctant to experience this as Ive already put on over a stone since giving up work, and stopping smoking. Think extra weight would also exacerbate my joint problems. YOur opinions would be very much appreciated.
Jo x
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joannie1964
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I don't use these, but I do follow a really well written blog of a lady whose child had used gabapentin with some success, that might interest you. The blog is called 'abominable abdominal', you should be able to find that via a google search ( I don't know this lady or want to promote her blog, it just came to mind when I read your post and thought it might help!).
I also have ME/fibromyalgia and endometriosis and use Gabapentin.I was put on it for endometriosis pain and have not noticed any side effects except that if you don't work up slowly and reduce slowly -eg 100mg p day,then the side effects like fatigue are much worse.The trick is to work up 1oomg at a time,to the dose that gives some relief.Gabapentin is for nerve pain and I do find it helps the stabbing,burning,glass like pain of endometriosis.I take 600mg 3x daily which seems to help.
As I am in a wheelchair,I am overweight anyway,but personally haven't noticed any weight gain.
Aswe are all different its difficult to advise but I would say that if you are suffering nerve type pain,its worth a try.
I am assuming you have osteoporosis ?I have just been diagnosed so about to start alendronic acid and not very happy about the side effects of these.
Hi daffodil, thanks for your reply. I do not have osteoporosis as far as I know but in 2011 I had a hip replacement . I have been having awful thigh pain on weight bearing and the orthopaedic surgeon wants to check for micro movement on the stem in my femur. Currently awaiting a bone scan. The implant I have is an Accolade one and in 5% mainly women the bone does not adhere correctly and so moves inside the bone causing pain. If this is the problem he said I could have alendronic acid which is quite positive with this particular problem but I've read awful reports about side effects.
Thanks for your advice and Id be interested to know how you get on with this med.
I was on gabapentin for 4 months I put on 2 stone I could not spell my speech was effected and I was zoned out all the time. They was good for helping with the bad nerve pain from injuring my spine. But I have come of them now they was no good for me so I am on Butrans patches now and I feel better and no side effects. Although not every one gets the side effects and they have helped other people. I hope you find something that helps and you can feel better.
Hi Poohbear_1 thanks for your reply. Ive heard reports about weight gain which scares me as already put on w eight in last year and I think this would make my joint pain worse. I'll have a rad up on Butrans patches.
I tried gabapentin and put 2 1/2 stone in wuicy and it didn't work
I tried oregabalin and that didn't either
Best I have is tramadol morphine and etoxorib( arcoxia) the latter seems to work best for the arthritis/ fibromyalgia but has to say nothing touches it when in a flare up.
I haven't tried the other one I hope these work for you x
I also was told by the ATOS lady to look on the ME and fibromyalgia sites as she has fibromyalgia and says she takes a supplement which really helps x I do t what this is yet
With osteoarthritis in my left knee, when it first happened I was on some major medications....
Gabapentin was one of those ... At first I was on a pretty low dose of 100mg and took it all the doses the doctor wanted. Bearing in mind at the same time I was also on tramadol 100mg and oramorph top ups several times a day too. So I was in a right concoction.... The pain in my knee left me bed bound for 4 months as I could not weight bare at all without screaming. Pretty soon all my medications were increased and at one stage my gabapentin was up to 900 mg several times a day...
The only time I experienced any type of symptoms was over Easter weekend... When the chemist should of delivered more gabapentin but did not. I went 3 days without it and let me tell you those days were pure hell... I was in a right state, high temperature, constantly felt sick... And I could not move at all without the room spinning and me being sick. But that was me... I understand that not wveryone gets symptoms.. I was told I was having withdrawal symptoms and my body was not coping not having gabapentin. It's the first time I had ever experienced anything like that and well it basically put me off taking any medications... But with all the high doses of meds I was taking I had to come off them in a safe environment where I could be monitored if I did not feel right. So as it happens I got re-admitted back into hospital with multiple blood clots in both my lungs.. From being inactive and bed bound due to my knee... And whilst in hospital the 4 weeks for that I slowly came off all yes all my medications. I only take the anti-clotting drug Apixaban now, I have to take it for the rest of my life as now I am prone to clotting.
I will say that everyone is different and reacts differently to medications... As far as taking them, I had no bad reactions. It was only when I was not given them I suffered....
I am now trying to manage my pain in my knee by learning to cope and live with pain. Sure some days I really cannot move as the pain is bad, other days I can... So now I take one day at a time, I am much happier without medication too.... I found it was starting to depress me so for me it was the right decision to come off them all.
I wish you well and I hope you find the right solution for you.
Dorafrance, you poor thing how awful for you. With such bad osteoarthritis in your knee would a replacement be a solution? I suppose being on such a high dose of gabapentin then suddenly going without it must have sent your poor body into a tailspin! I have an appointment tomorrow with my Gp so will discuss with him.
Thank you for your reply, I do hope everything went ok at your appointment?
As for me and my knee... Ha ha the doctors will not give me a new knee, not yet! For several reasons... Being too young (43) as the replacement will last about 10 years! Oh and I now take Apixaban it's an anti clotting drug, I have to take it for the rest of my life due to having multiple blood clots in both lungs recently. Yes due to inactivity, from my knee!! The thought about trying the injections in my knee... Then decided not to due to the risk of a bleed.. With the Apixaban... See it's works the same as warfarin, thins my blood. So all they have said is if it's like it in 1 year with no progress they will look at me again! I cannot walk without a limp and cannot straighten my leg... I decided to come off all the medications.. And now am pleased I did.. See I am coping with the pain in my knee.. Not so much with the back pain that goes with the limping though!! A long slow road to recovery I am on...
Hi sorry to hear you are suffering with so many ailments, I hope you are not in too much pain.
I have been diagnosed with crps and have been prescribed gabapentin, amitrytaline and tramadol. I am quite weight conscious and after being on these Meds for several months I have Not put any weight on. Side effects include dry mouth, feeling spaced out, forgetfulness and whilst out walking I have fallen and stumbled a number of times, which was really worrying taking into account I am recovering from a broken wrist. After my fall the doctor recommended me to gradually reduce dosage on gabapentin and tramadol. So far so good! This has reduced the stumbling and I feel a lot sharper mentally.
Hi cillasmum thank you for your help. Maybe the tramadol was causing the spaced out feeling and stumbling rather than the gabapentin but your comments about not gaining weight are encouraging. Since losing my job and being in so much pain I've not been able to keep my weight off and have put on 16 pounds since last summer. This prob doesn't help my joints. I'm not massively overweight but don't want to put on anymore either! Of course my leg pain could be down to the hip replacement in which case that's another story!
How are you today? I hope you are enjoying the nice weather
Looking back over the last few weeks my condition re: stumbling and falling occurred with increases in dosage of gabapentin. I recall going for a walk and a tree had fallen across the path. I saw the tree but my brain did not register that I had to duck! So slap bang wallop into the tree! A few days later a ladder was placed across the stairs and my husband told me to watch the ladder. A few minutes later I took him a cup of tea up and again knocked my head on the ladder!! At my doctors appointment he specifically told me to reduce the gabapentin as he said it was affecting my brain signals which makes sense as it is generally used to treat epilepsy.
Really sorry to hear you have put weight on 😒 but great to hear that you have stopped smoking! Well done you!!! I haven't been to work for several months but I try and exercise every day, even if it's only walking to the shops. Also I recently took up tai chi at the local gym and this may be something that may work for you? This has been really beneficial without the pain of energetic crazy classes!! Please let me know how you get on and take care now
Hi cillasmum (tina) thanks for asking how I am. I've actually had a good day today despite only getting about four hours sleep! Tai Chi sounds interesting. I cant manage anything strenuous so this might be good. Saw Gp Friday who said he would prescribe gabapentin if I came off amytryptaline as they contraindicate each other but worried that I won't get to sleep then. I've stopped sleepers, but amytryptaline helps although takes bit longer! Dilemma to ponder on! How are you doing today?
Hi Jo thanks for replying so quickly! Good to hear you've had a good day despite only having 4 hours sleep. How come you only had four hours sleep? Are you waking with pain? I am also taking amytriptalene and this was prescribed as I was waking up with pain. My consultant told me they are generally used to treat depression but they are also used as a muscle relaxant so i take 2 at 6pm and then I am fighting sleep from 9pm onward. However not too bad today as had a good kip last night! Had a really nice day today, thanks for asking. I think that having nice weather really helps as it puts everyone in a good mood. Not too sure how the next few days are looking like, fingers crossed it won't be as cold as last week. You should definitely enquire about tai chi as it does sound ideal for you. I have also started swimming which may also be good for you as the water supports weight enabling you to have more movement. I can just see them pounds rolling off! Good luck with everything and let us know how you get on.
Hi Tina, think I slept badly because I took late pm nap. Only meant to chill out and listen to some music but fell asleep! Then hubby was snoring!!! Amittryptaline in higher doses is an old style anti depressant from.the tricyclic group but in low doses used for pain. Also used in young children for bedwetting! I'm.not there yet thank God lol! Do go swimming occasionally but have to be in mood! last year with aid of many painkillers we went to Mexico. I swam everyday and water was so warm and soothing really helped. What part of country are you in?
Hiya Jo I hope you have enjoyed your bank holiday weekend 😊 and that you have not been in too much pain. I Reside in the north west - Liverpool, where are you from? Feel like I done loads this weekend so really tired now... Mexico sounds like a lovely destination and it sounds as if you had a fab time! Do I do hope our weather brightens up as it's been freezing here.
Must admit it's difficult to motivate myself to go swimming but I just have a talk to myself and then get my act into gear, haha I mainly go if my hair is desperate for a wash!!
Hey Tina that made me laugh about your hair! Went to a local carnival today for about half hour but had to come home and lie down as my leg was agony! I have to try to stop focusing on pain and try to distract myself! Hope you are doing OK today
That's great that tramadol works for you surprised since it is not a narcotic did zero for me, pain unbearable. Unfortunately, when people like us are in high grade pain , pain meds are necessary , unless you want be extremely miserable and have a poor quality of life, at least that's the way I look at it. Best of luck to all
Hi Rinoman1 sorry about your awful pain. I don't take tramadol, I tried it once for herniated disc and didn't touch the pain. The meds I'm.on only take the edge off sadly.
Hi. Thx for reading responding. I'm from northeast u.s. this recovering from surgery crap is getting old, my third surgery in 14 months, fun I'll tell you, lousy existence you know what I mean. Hope it all works out for us. , drop a line anytime
Rinoman1 that does not sound like fun at all. Poor you so much surgery! My right hip was replaced in 2011 and have had so many problems since. Now surgeon thinks I may have micromotion from stem inside femur. It was a cementless Accolade implant which I gather has some big lawsuits in states! Having bone scan in two weeks to check it. I've just been for 15 minute walk and now I can't weight bare on it at all! So fed up like we all are on here. Life seems so unfair sometimes!
Yes hi, I'm not a blamer but I understand. I hope you get better soon. Its a tough life and only people who have been there, get it.like us. I'm in a difficult situation not knowing if I can earn a living cause no one can live on disability money which I haven't done yet. I would kill to be back working in healthcare. But I'm in my 50s now. Its depressing counting on others which only lasts so long, take care. I need to win the lottery, then I could help others.
I have spine problems which give me a lot of pain. I had to come off Gaberpentin as it messed with my head. I kept missing conversations and rejoining them where I had left them. Resulting in some funny episodes where I was just talking rubbish (more than I usually do!!). Actually it was quite frightening. So I had to come off Gaberpentin slowly. My GP said my symptoms were not unusual and Gaberpentin did not suit everyone. It may suit you. Good Luck.
Hi Court, thanks for your reply. I guess as with all drugs some suit and some don't.... there is only one way to find out although for some reason my GP has been reluctant to prescribe it before now. seeing him this pm so will chat with him then.
Jo
Hi,
I too am on Gabapentin also co-codamol the Gabapentin does not make me feel bad at all not like the co-codamol but I have despite cutting back on my food put on over half a stone in weight! and am seriously considering whether it's worth taking them, I was told to keep my weight down. I too have put on weight with stopping smoking so this extra weight isn't helping with my problems (back knees & feet) osteoarthritis. I hope you do not have the same problem with taking Gabapentin
Hi vondel, I take codeine which doesn't space me out at all,mind you with the amount I've swallowed over the years I aqm used to it.....only hope it doesn't give me kidney failure. This weight gain is what I am most worried about....isn't it awful that if you find a drug that works you just get other problems instead! Off to see GP now so will update later.
Jo x
Hello,
I take Gabapentin for Fibromyalgia as well as other pain meds for osteoarthritis. I must say that it appears to work for me as the pain in my hands is not nearly as bad. I already have side effects from morphine patches and codeine and have not noticed any more from the Gabapentin.
I guess that getting the right balance of meds really is an individual journey.
I have been taking gabapentire for about 14 years now and have experienced no side effects at all. For a long while I was taking the maximum dose and it greatly relieved my severe headaches. I have reduced the dose myself as I was afraid of being addicted. I now take 3x300 mg caps a day . I had no withdrawals or difficulties. I would like not to have to take medication but I need to, I now have fibromyalgia and they help. I know it's not the same for everyone but for me they have been wonderful.
Hi punsipu thank you for your reply. I spoke to my gp today and he would only give me gabapentin if I come off amytryptaline which I take at night. Helps me sleep. I was on sleeping tablets but managed to get off them so worried if I stop amytryptaline I won't sleep. He left if with me to think about. Don't know if gabapentin has sleep properties in it. I'm hoping in.one sense the awful leg pain is related this replacement as there are meds to treat it but difficult to kno if pain is fibromyalgia, arthritis or cfs? What a wreck!
I take a my amytryptaline at night too for my fibromyalgia. They don't seem to clash. I know that gabapentine can make you drowsy but it doesn't affect me that way. I also take topiramate, and diamox to prevent headaches, diamox to reduce the pressure in my head and topiramate works like gabapentin. I hope you get the medso that sort out your pain. It's not much fun at times when you are tired and feel like you can't take any more. Mostly we smile and get on with life enjoying what we can, don't we. Good luck at Dr's.
Alendronic Acid. Bad drug. I only took two doses and regretted it big time. Both doses caused flu like symptoms and hip pain. Worst of all was the pains in the joints of both hands and fingers which stayed with me for about 11 months. And during the day I wore splints to give me some support. Right hand was affected more than the left. I've of other terrible side effects on the Osteoporrosis forum and on an USA site called I think: ask the patient.com AA is on there with a different name something like Fossamax.
AA started life as an ingredient of washing powder. It is the cheapest of all the drugs for Osteoporosis. This was the 4th drug for Osteoporosis I was prescribed. All previous ones had bad side effects for me.
Now you could say I was unlucky, your GP might say it was because I was taking other drugs. BUT I was not. Only the calcium D.
Yet there are people who get on alright with taking it..
I don't take any drugs for Osteoporosis these days.
Hi rosepetal60, sorry to hear about your experiences with AA. SpOke to gp today who said it's a great drug! But I have read about these problems so it's a bit of a dilemma. Guess I need to waitrose see result of bone scan.
But there are Osteoporosis drugs to try before resorting to AA. it's just there not as cheap as AA. All about money. I regret very much taking that second dose as I did have some bad symptoms with the 1st dose. But nothing like the side effects with the second dose.
Hi rosepetal60, I don't have osteoporosis though, I had hip replacement in 2011 which was a cementless one and surgeon thinks it might not have fixed properly to femur hence pain. Don't know if that changes anything with regard to treatment.
I take Gabapentin 3/4 400mg every day and have been taking them for 18 months, I take them for extreme headaches, my doctor gave me them after 20 years plus of putting up with headaches, I was reluctant at first, but that was only because I didn't understand why I was taking them. My headaches are not as bad these days but I still take them as they work. Also a doctor once told me if you need the medication you very rare get the side affects, I have also just lost 3 stone via slimming world, at least give them a go they may work for you.
all I can tell you is, when I first went onto gapapentin I was really tired and drunk feeling for almost 2 weeks. Suddenly these feelings left me and I can now say I am almost free from side affects apart from the almost frequent diarrhoea. It suddenly hits me at least once a week. But it's almost worth having/ putting up with. However I a not pain free. Maybe some other drug would work better, but try and weigh up the effects versus the good.
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