Hi! Spinal arthritis sufferer

2

Comments

  • suzygirl
    suzygirl Member Posts: 2,005
    edited 30. Nov -1, 00:00
    Froggy, I think it took a couple of weeks for the gabapentin to kick in. The headache doesn't sound right, maybe ask your pharmacist for advice?

    I don't know what to say about your doc and pain relief, all docs differ. Maybe it is because I wanted to watch my son play sport? From my experience the goal posts move when it comes to sport. :lol:

    I am sorry you were not offered more meds. I hope the gabapentin does help you soon.
  • frogmella
    frogmella Member Posts: 1,111
    edited 30. Nov -1, 00:00
    Thanks for the advice suzygirl. Have just texted a friend who is a pharmacist - I don't like to keep bugging him though!

    To be honest it doesn't matter about the pain relief now - I just accepted it at the time and got on with it!

    Thanks again, it is so nice to have friendly people to get advice from.

    Have a good day. :)
  • kentishlady
    kentishlady Member Posts: 809
    edited 30. Nov -1, 00:00
    Hi Suzy Girl and Frogmella. Well have visited my GP this morning who was extremely helpful. Think I have, at long last, convinced her how much the pain is affecting my life. Suggested Gabapentin and Pregablin to her. She has given me prescript for Gabapentin. Just hope I don't get too many side effects from it. She and the pharmacist both explained the dosage and how to build it up gradually. How long did you find it took for the tabs to start working, and what side effects did you get, if any? She has told me to continue with the paracetamol as well, but hope that I may be able to reduce the dose if the Gabapentin works. I had a very bad week last week with the sciatica and numb foot etc and didn't get very much done at all. However, this week has been an improvement, maybe because I was forced to 'take it easy' last week? Hope you are both having as good a day as possible. Beryl (KL).
  • frogmorton
    frogmorton Member Posts: 29,332
    edited 30. Nov -1, 00:00
    Well done YOU KL

    Your doc has understood you I think.

    Gabapentin is a good one to try. I was on it for several months and for me I had no side effects whatsoever. In fact it was the only medication I have ever taken that has had no ill-effect on me.....sadly I got right up to 3600mg a day and no help either :(

    There are plenty on here who swear by it though so I will cross my fingers you are one. :)

    Love and luck

    Toni xx
  • frogmella
    frogmella Member Posts: 1,111
    edited 30. Nov -1, 00:00
    Hi again Beryl!

    I have been on the gaba for two weeks now. I have just upped my dose from 100mg 3x a day to 300mg 3x a day as I was getting bad nerve pain. It seems to be working better now.

    I have been having some "senior moments" shall we say (I am 36 so probably too young for them to be age I hope!). My mind just goes blank or I say the wrong word - pretty irritating. I had pretty rough withdrawal from the ami. My headache has gone now so I assume it was withdrawal not the new tablets.

    I hope the gaba works for you, I know living with nerve pain is awful. I will take being a little absent minded over nerve pain anyday!
  • kentishlady
    kentishlady Member Posts: 809
    edited 30. Nov -1, 00:00
    Hi Toni. Well so far, so good! Have been told to increase dose of Gaba very gradually. Is that what you had to do? Had a bit of a 'woozy' head this morning, but it cleared and am feeling ok and hope it stays that way and actually does something to relieve the pain. My GP has said I shld eventually get up to taking 3 tabs 3 times daily. However, leaflet in box with tablets says maximum dose should be 2 tabs 3 times daily. Have spoken to pharmacist who sd 'the book' says 3 x 3 is max does but agrees that leaflet says 2 and that there is obviously a discrepancy!! Sd should double check with my GP and have left a message at the surgery who sd they will get her to call me. Think I am entitled to 'senior' moments - not quite double your age! Have only had OA for about 4 years. Told my GP it was ruining my life as can't get out and about as walking is so painful and that had just GOT to get it sorted it as am not ready to retreat indoors permanently. Think I have 'got through' to her at last! Am trying to find someone to come in for an occasional hour and do a major hoovering and clean bathroom. Can manage everything else. If can get pain sorted out it will make such a difference. Hope you are getting on ok. Do you have any 'sitting down' hobbies? Also told my GP about this website and forum that I'd come across and said how I found it had helped me. Mentioned to her that I don't think there is enough advice and help for people with arthritis. No-one tells you what is available and I think it would help if they did. Moan over!!!! Am keeping my fingers crossed (and everything else) for the Gaba to work. Take care. Beryl
  • kentishlady
    kentishlady Member Posts: 809
    edited 30. Nov -1, 00:00
    Hi Toni. Well so far, so good! Have been told to increase dose of Gaba very gradually. Is that what you had to do? Had a bit of a 'woozy' head this morning, but it cleared and am feeling ok and hope it stays that way and actually does something to relieve the pain. My GP has said I shld eventually get up to taking 3 tabs 3 times daily. However, leaflet in box with tablets says maximum dose should be 2 tabs 3 times daily. Have spoken to pharmacist who sd 'the book' says 3 x 3 is max does but agrees that leaflet says 2 and that there is obviously a discrepancy!! Sd should double check with my GP and have left a message at the surgery who sd they will get her to call me. Think I am entitled to 'senior' moments - not quite double your age! Have only had OA for about 4 years. Told my GP it was ruining my life as can't get out and about as walking is so painful and that had just GOT to get it sorted it as am not ready to retreat indoors permanently. Think I have 'got through' to her at last! Am trying to find someone to come in for an occasional hour and do a major hoovering and clean bathroom. Can manage everything else. If can get pain sorted out it will make such a difference. Hope you are getting on ok. Do you have any 'sitting down' hobbies? Also told my GP about this website and forum that I'd come across and said how I found it had helped me. Mentioned to her that I don't think there is enough advice and help for people with arthritis. No-one tells you what is available and I think it would help if they did. Moan over!!!! Am keeping my fingers crossed (and everything else) for the Gaba to work. Take care. Beryl
  • frogmorton
    frogmorton Member Posts: 29,332
    edited 30. Nov -1, 00:00
    Hi Beryl

    So far so good yes :D

    I think the wooziness is not unusual and should ease in time. A lass on here told me that for her she feels 'lighter' somehow. I really hope it helps you :)

    Sounds like you did a great job at the GPs what a good idea telling them about the forums. Have you thought about going on one of the courses? How to manage your long term condition? I did and it helped a lot.

    Someone to help with the 'heavy housework' is a very very sensible idea I agree 100%

    Hobbies? Well luckily for me I have 3 teenage girls at home so have lots of distractions, I read my kindle, took up tapestry again thanks to the course i went on and of course there's here :D

    See you soon

    Love

    Toni xx
  • frogmella
    frogmella Member Posts: 1,111
    edited 30. Nov -1, 00:00
    Hi again Beryl,

    My GP told me that we had a lot of "wiggle" room with the gaba dose. On another board that I visit (sorry) I have read about people on a total of 3600mg a day, 4 times my current level. It is hard for me to separate the initial side effects from my withdrawal from the amitriptyline. I felt awful for about a week and I suspect it was the amitrip withdrawal not the gaba.

    I do notice that I have to make a special effort to concentrate. I think I appear a bit rude in conversations sometimes, I have to "fill in the blanks" when I come back!! I am a bit worried about these memory probs when I go back to work teaching next week. I can see the kids ripping me to shreds on a bad day!

    Sitting down hobbies? I read, a lot - see the book club thread in the chit chat forum, I do the wasgij jigsaws where the picture on the puzzle isn't the one on the box - much more interesting than the normal ones, watch a lot of box sets and films from well known dvd hire co.

    Well done for getting someone to do the heavy housework. I should, but at only 25% at work I feel guilty. Also my OH is "between contracts" at the moment so he could do it! Just very slowly!! When he gets another contract I will get someone in for a proper clean and then once a week or so to hoover and mop etc. We have dogs and cats so the place gets pretty dirty.

    Also well done for telling the GP about these boards. I have mentioned my use of forums to my new surgeon and explained that it is because there is not enough info given to us. He thought it was a good thing.

    Good luck with the Gaba - I have heard good things. I know that it doesn't always work but there are other things to try so don't be too worried if it doesn't. Also it will take a while to kick in and there might be dose adjustments on the way.

    Nice to meet you, shame about the circumstances!

    Helen
    x
  • kentishlady
    kentishlady Member Posts: 809
    edited 30. Nov -1, 00:00
    Hi Toni and Helen. Thanks for your replies, advice and support. Much appreciated. I was about to ask how long it takes for the Gaba to start working. Have at least had 2 nights much better sleeping, so don't know if that is as result of the tablets. Hope the wooziness does ease. Have had a couple of days at home so able to cope, but have to go out tomorrow - hairdresser appointment and then meeting my Son to go out for the day (weather and state of back permitting!). He lives about 5 miles away, so usually see him at weekends when he doesn't have any other social engagements. Hope you enjoy your weekend. Will think about the course, sounds as tho it might be a good idea. Think these forums are brilliant idea. Just wish I had done some 'googling' earlier.

    Love

    Beryl
  • kentishlady
    kentishlady Member Posts: 809
    edited 30. Nov -1, 00:00
    Hi Toni. Could you let me know what course it was you went on and anything about it please. Would be very interested to know more about it. Thanks. Beryl.
  • kentishlady
    kentishlady Member Posts: 809
    edited 30. Nov -1, 00:00
    Hi Toni and Helen. Can either of you tell me how long it takes for this awful tiredness and 'wooziness/swimmy' head to stop. It's driving me mad and am wondering how long I've got to put up with it. The tablets haven't helped with pain level yet either! Hope you are both doing ok. Love Beryl
  • frogmella
    frogmella Member Posts: 1,111
    edited 30. Nov -1, 00:00
    Hmmmm,

    i had the woozy head for about a week and again when I upped my dose. The tiredness is less than when I was on the amitriptyline though so I can't really comment on that. My pharmacist friend thinks the side effects should be transient.

    Helen x
  • kentishlady
    kentishlady Member Posts: 809
    edited 30. Nov -1, 00:00
    Hi Helen. Thanks for the info. Am really struggling with the gaba. Am not so bad in the morning, but about an hour after have taken the second dose I am just completely crashed out and then the awful wooziness starts. Can't go out at the moment as feel too shaky to do so. Am hoping to speak to my GP tomorro (she doesn't work on Tuesdays). Did speak to the pharmacist today - the pharmacy is next door to our surgery - and he sd he thought it best not to increase the dose (due today), until I had spoken to my GP. At the moment it doesn't seem to be doing very much to help the pain either!

    Beryl.
  • frogmella
    frogmella Member Posts: 1,111
    edited 30. Nov -1, 00:00
    Sorry to hear you are having such a bad time on it. I have to say it doesn't seem to be doing much for my pain at the moment either. I wonder if I will end up back on the ami? Now that really makes me sleepy!
  • kentishlady
    kentishlady Member Posts: 809
    edited 30. Nov -1, 00:00
    Hi Frogmella. Well have now been on gaba for a week. Today my head doesn't seem quite so bad, so maybe things are improving. Am waiting to speak to my GP about when to increase dose. Must admit that at present it's not doing much for pain level but maybe when I increase the gaba that will hope. Hope so. Have tried Ami and didn't get on with it at all, it completely spaced me out and can't go around feeling like that all the time. Have read of a couple of other possible options that will mention to my GP is Gaba doesn't work, but am hoping it will. Beryl
  • frogmorton
    frogmorton Member Posts: 29,332
    edited 30. Nov -1, 00:00
    Glad you are less woozy. Some of these meds do need us to bear with them don't they?

    the course was run by arthritiscare and called 'How to manage your long-term condition'

    If you look on the AC homepage I think you can look what's in your area. I rang them then and got my name down on the list.

    Love

    Toni xx
  • kentishlady
    kentishlady Member Posts: 809
    edited 30. Nov -1, 00:00
    Hi Helen and Toni. Well, have had to come off the Gaba. Have never felt so awful in my life. Wasn't able to go out of the house for a week as the dizziness was terrible. Eventually got a message from my GP to say to come off it, which I did very gradually. Am now feeling 'normal' again, thank goodness. It didn't do very much for the pain anyway. Presume that the prebagablin isn't really an option as I take it that it has some of the same ingredients as the Gaba (as the names are very similar). Have read about 'Lignocaine' pain patches. Does anyone know whether they work? Have had other pain patches my GP has tried me with but they gave me side effects too. I just can't cope with side effects AND the constant pain, the pain is bad enough without trying to cope with anything else. Have had a rough week and feeling bit fed up. Now got another appointment with my Dr to discuss. Does anyone else find stairs/steps a problem? Moving is not an option for me but am wondering if I should consider getting a 'stair chair' installed. This is what so annoys and frustrates me that no-one gives any help/advice to us. Has anyone else come up against this problem, or is it just in my area? Best wishes to you all. Beryl
  • suzygirl
    suzygirl Member Posts: 2,005
    edited 30. Nov -1, 00:00
    Hi Beryl,so sorry to hear that the gabapentin has not worked for you. I hope your doctor can suggest an alternative.

    I have terrible trouble with steps and stairs,even a slope is difficult for me. I don't have a chairlift, I just muddle through. Maybe it is an option for you. Have you been assessed by OT? They may be able to help you with ideas and tips.

    The nerve pain drives me mad, so you have my sympathy. I hope you can find something to make things easier for you.
  • kentishlady
    kentishlady Member Posts: 809
    edited 30. Nov -1, 00:00
    Hi Suzygirl. Am seeing my GP again next Thursday so hopefully may be able to sort something else out, with luck! I can manage steps and stairs down, but it's going up that is such a problem. Think also the fact that I had a fall (backwards down the stairs) - not from too high up fortunately - as a result of a trapped sciatic nerve - has made me a little wary of stairs which probably doesn't help. Hope you are managing ok. Beryl
  • frogmorton
    frogmorton Member Posts: 29,332
    edited 30. Nov -1, 00:00
    Hi Beryl

    I am so sorry the gabapentins were not for you :( Pregablin IS different, but it may be that you will react to that too - if it was me I would think about it though. Have you tried amitripyline at all? I know it's also an anti-depressant, but can help us at a much lower dose than for depression.

    I haven't tried those patches on bu-trans ones, which I still use now. I started on those at the lowest dose and built up.

    As for the stair lift - you should begin by contacting your local social services and asking for an assessment - they will send one of their own OTs out (here anyway!) and might even be able to help in other ways too.

    Love

    Toni xxx
  • kentishlady
    kentishlady Member Posts: 809
    edited 30. Nov -1, 00:00
    Hi Toni. Well, I saw GP last week and she decided I needed to try the pain patches again so now have the Butrans pain patches but very low dosage. Worked fine for a couple of days but the effect seems to have worn off and am wondering if I need a higher dosage? Have left a message for her and have to phone back later to get her answer. Have tried Amitriptylene but couldn't get on with it at all. I mentioned Pregabalin to my GP but she told me that it was the same 'group' as Gabapentin and didn't think there was any point in trying that as I'd had such an adverse reaction to the Gabapentin. Had high hopes for the pain patches but seem to be back to square 1 again, but am hoping that a slightly higher dosage will help. Hope you are getting on ok. Am making enquiries about the 'stair chair' but at the moment it seems to be impossible to even get an answer from our local Social Services Department!!! Hope all is as well as possible with you. Beryl
  • frogmorton
    frogmorton Member Posts: 29,332
    edited 30. Nov -1, 00:00
    Aha! Beryl sounds like the patches might be the answer for you. You ought to be able to go up to the next level if you are on the lowest dose :) I am so pleased for you.

    Doesn't necessarily mean you got used to them more like it's not high enough for you. Ask what you can take for any 'breakthrough pain' while you're at it. There are times on my patches when I need to add something else for a time - maybe only a day or so, but it's useful to know.

    I am doing pretty well thanks. Glad it's Friday :wink:

    Love

    Toni xxx
  • kentishlady
    kentishlady Member Posts: 809
    edited 30. Nov -1, 00:00
    Hi Toni and Suzi Girl. Hope you are both getting along ok. Well, have now been on the higher dosage of Butrens patches (10 micrograms) for a few days but they do not seem to be helping much and I am feeling a little fed up. Really thought that we'd found the answer to help control the pain so that I can get on and do things again , but seems that is not the case - well it isn't at the moment! Does anyone else on this forum use them? If so, how do you all get on with them? What strength are you taking? Have got another follow-up appointment with my Dr in couple of weeks for further discussion. The only thing I find which really helps is a 'warm wheatbag' but can hardly walk around with that attached all day!!!!
    Love to all

    Beryl
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello kentishlady, if you re-post this on the Living with Arthritis part of the forum I am sure you will garner a wider-range of answers as more people hang about on there than here. I don't use patches (yet) but I think a fair few do. As for heat whilst moving about what about those patches one can stick on? I am not familiar with your case and what is happening with you but I used them recently when I pulled some rib muscles with lugging my rollator in and out of the car - they eased things very quickly. I wish you well. DD

    PS Suzy is currently in hospital - I've just put a thread on that other forum to let people know.
    Have you got the despatches? No, I always walk like this. Eddie Braben