I have just got an appointment confirmed in the post today with the neurology team, since the GP referral in July, it didn’t seem I was moving in the queue to get close to an appointment date. Then I had the willy wonka golden ticket of one recently only for it to be canx 3 days later, now another with a month less wait.
Do you have a similar referral ?
Hopefully finally after all this time, a chance to talk to someone who is a specialist. If you do have a referral, be interesting to see what their suggestion of help is for you ? Needed some good news as walking is not at all easy today.
Down to 10-15-10mg of baclofen, going to reduce by 5 mg on every 3rd day I think.
Given the relatively short time span before some of these medicines start to wear off, I can’t help wondering why in the recovery unit I took doses at 8am, 2pm and 8pm. Given medicines take about 20 mins to start to be absorbed, that 8pm dose was always close to being in bed,walking/moving was minimal,so only ever minimal benefit.
Dawned on me it’s been even worse at home as it has slipped into a 8am,2pm,10pm. Will have to read up more on time spans but thinking that later dose now can never be of much benefit and will have pretty much worn off completely by the time I wake.
@Nigelglos I live in the States, and only have a pain Dr appointment coming up. I’m really nervous because I feel like this is the last stop. I just want my shoulder/arm and leg not to be so stiff but not at the expense of additional functionality loss. Yesterday, I asked my it if weakness causes the stiff feeling once you start using it as that’s when the pain started, months later after initial paralysis. Unfortunately she had no answer. I am starting therapy at another location that is more nuero based so hopefully someone will have at least some thoughts. I specifically asked yesterday to work on arm strength, not fine motor, which increased my pain last night but today it is back to baseline.
@Mbhope the zoom groups are still happening. If you want to join click on the menu (3 lines next to profile pic - well on my phone thats where it is). Select groups, then select zoom open group, then select join. Once you’ve joined you should then receive the meeting notification.
@Mrs5K@Mbhope
Thanks Ann, I have added Mbhope to the Zoom Open Group members list.
@Mbhope you now have access to all the group sessions’ info. You are welcome to join any session. A new set of info will be posted in Messages in the ZOG area in the next couple of days.
Just as an update I struggled to give up the baclofen on two attempts as felt pretty rotten when on reduced dose but going back to 15,15,15 didn’t really improve things so I’m not sure it was connected.
Have doubled one of my pregablin doses and felt really out of it at times the last two days. Even though I know it’s likely it still feels very uncomfortable when you have a foggy thick head and are pretty dopey.
I think it might be early for full benefits. I have less severe pins n needles but increased stiffness. Sure that wasn’t on the list to expect.
When no two days are ever the same it seems very difficult to know for sure what is medication driven and what is other events. Surely things will settle at some point.
My appointment with the stroke team has now gone from Jan (canx) Dec (canx) to now Feb. Almost feels a bit cruel to cancel so quickly after getting one.
Today’s challenge will be left leg only cycling on the exercise bike at medium/high resistance and to create my own exercise plan based on what I can glean from you tube and the physio…assuming I am not super dopey later on
I’m 10 days on now with my increased pregablin, just a little increase of 150mg+75mg+75mg. I feel like a zombie at times, bit detached. Very tired.
I cant sense any benefit. My foot now has a burning sensation, face has the same tingling,same amount of numbness. Increased stiffness in hand.
I assume some of the odd sensations will arise with any of these medicines.
Can I ask, from your own experience of these sorts of medicines (bearing in mind they may take a while to work) when would you bail out and try something else ?
How bad was your own experience of taking them ? And how long before you got used to them ?
Hi Loraine
I know I have asked you a lot, thank you for all your previous replies.Could I ask you, what/how bad would your symptoms have been before you took gabapentin and what did they reduce to after you got to your current dose ?
I’m trying to find a way to judge if the increased pregablin dose journey has “worked” or if I need an alternative.
From the information I have read and from the pharmacist call, if my neuropathic pain was 7 out of 10 in severity now, the aim is to look to get this down to 3 or 4.
Difficult to even know what these numbers really mean in how you actually feel. Is it 3 out of 10 for everything or just the burning or just the tingling feeling was better. The over sensitivity or numbness are others.
Cheers nige
Cheers Loraine.
Looks like going to make the switch to gabapentin in the new year after a chat with the pharmacist.
This week the pain syndrome has been pretty bad, definitely turned up a notch or two or even 3, felt a bit down with it but for some reason it eased a bit yesterday. I have a 15 min exercise bike challenge, in late Oct I managed 3 miles going flat out and yesterday I managed over 4 miles in the same time so something is going in the right direction. I also beat my 1/4 mile sprint time.
Think I need to get through this phase, not sure what a reduced pregablin will make me feel like but imagine it will be a bit tough.
Right, let’s see if I can beat my best 1.5 mile time… I think the recumbent exercise bike is the best investment I have made in my recovery
My husband had his stroke Dec 22, 7 weeks in hospital due to feeding tube & covid then 12 weeks in rehab. He was determined to walk out which he did but i feel that we were just given a load of exercises and he would be put on the community physio 12 week waiting list. Follow up appintments with consultants would be in 3 months and that was it. We found a private physio but very expensive so limited to how many times he can come. Motivation was good at the beginning but has developed a lot of muscle pain, gp thought it might be the statin he is on but bloods came back clear, also lots of joint pain so not doing regular excercise now hes not walking as well as he was. Dont really know where to go from here to get him help,trying to get a gp appointment is just desperate . Sorry about the long rant.
@Dip58 welcome to the group. Sorry your husband has had a stroke. If he can he should try continuing with the exercises despite the pain as it can help. Although shouldn’t push it too far.
As others have said keep persevering with getting a GP appointment & ring the stroke team for some advice. E-consult is a gopd way to try your GP.
