I have just had enough now of being in constant pain and the tablets they give you don’t work (I’m on 1200mg Gabapentin three times a day and Amitriptyline 75mg at night). When I take them I say to my kids i might as well be taking Smarties cause they don’t do anything for the pain. I have been like this for 18 months with the pain. I’m lucky if I get four hours sleep a night cause when I roll over it hurts. I have started having Copaxone and when I inject my legs I come up with lovely bumbs from it.
Sorry for the moan but I don’t know what else to do anymore. I took my boys to the dentist today and came home and I have had enough and I just want to sleep now.
But on the brighter side I wish everyone has a great christmas.
It is frustrating I know, but there are options. I was on Gabapentine for a few months ad ad a similar experience to you. They just didn’t work. When I spoke to the MS nurse about it she switched me to Pregabaline (Lyrica). Once the dosage had been sorted out, I found them to be a lot better. Perhaps, if you haven’t tried them previously, it might be worth mentioning them to your MS nurse / doctor. Richard
I have been on Pregablin in December 2010 when first diagonised but had really bad side effects with it so the neuro when I saw him in April 2011 put me on Gabapentin and I have been told by my MS nurse that I can’t come off it until I have seen the neuro again in April 2012 which is what he told her. My nurse has said she understands what I am saying to her but she can only tell me what the neuro has told her and she said she would feel the same if she had to take 15 tablets a day.
At my local doctors surgery you are luckly if you see the same doctor twice in a row so you have to explain it all over again what is wrong and what you have been told. I was told once that cause the neuro told me I could go no higher than 300mg 3 times a day so left it at that but have been and seen other GP’s who are happy yo let me go higher then told that I can’t go higher cause I have got addictied to them and it is like taking a class a drug and I should stop taking so many so I dont know what to do. My nurse has spoken to my neuro and he is happy with the dosage I am taking at the moment and we will review it again in April 2012.
So if any of this has sounded nasty when I know you are all trying to help but it seems I am banging my head against the wall casue what ever I try it dont work. I’m waiting to hear to see if the other doctor’s surgery what is a 20 min bus ride away from me is taking on any new patientssoIi have had enough of the surgery I am with. I went once to see a doctor only to be told that he had a medical emergency and he was delayed for two hours so I waited to find out his emergency was a cup of coffee so as you can think I wasnt very happy over that.
Sorry for the moan again i just don’t know what else to do.
All I can suggest is to ring your MS nurse and tell her,don’t ask,that you must see the neuro asap,so that will be January I would’ve thought.
You cannot wait untill April,you are in constant servere pain,can’t sleep and have no quality of life.
Your GP cannot help and this situation cannot go on.
I understand as much as I can what a nightmare this is for you.I take pregablin which luckily for me works well,but as that’s not an option for you,you really need to see the neuro and can’t possibly wait untill April.
I hope your MS nurse is helpful and supportive,but you can’t be fobbed off with having to wait untill April so if she isn’t helping you,take it higher.Contact PALS first and take it from there.
As for your GP,well,they’re no help so maybe speak to the practice manager about your need to see the same doctor everytime you make an appointment,as you must have continuity of care and actually you have the right to see the same GP everytime if you want to anyway,so don’t let her fob you off either ! And if you happen to take how horrible all the pain and lack of care is making you feel out on either of them,you go right ahead.
They are health care professionals and have a duty of care towards you and so far,they have all failed. It’s not acceptable.
I really hope things improve for you and you, at the very least, start to get some help,xxjo
I have been on the phone to my MS nurse and she is going to keep pushing to have my meds changed by the neuro and she is going to try her hardest to get me a appointment before April.
I have heard back from the other doctors surgery and they are happy to take me on and I will also see the GP they have there who deals with MS so it looks like I may have found the one doctor that might understand whats going on.
I will keep fighting and I’m not going to give up at all. I’m in hope one day that I will get the right meds that will help me with the pain.
Have got to wait to see if my ms nurse can get me a earlier appointment but with xmas coming up i dont know when she will be able to talk to the neuro so i have everything crossed
All i want to to have the edge taken off the pain if that makes sense so i can have some kind of life and not worry about the pain to much