Hi Richie and Colin
As you are in the same position as me, I thought I would let you know that when I do anything strenuous or out of the normal (doing nothing) it makes the tension in my ribs and left side gets extra stiff/tight even down to the muscles in the back of my ear and temple do the same. I also have memory fog, so I now do word puzzles to activate my brain been advised its good for memory stimulation. I am waiting for the stroke consultant (Leeds General Infirmary) to contact me with a after summer follow up appointment, he suggested where I will ask him about these symptoms again and keep you both posted.
Try to keep positive seems we are luckier than quite a lot of the people on this forum so head up and keep pushing forward.
PS; Seems a shame we not allowed to cannot (chat by phone) members on this forum as I think it would be good to share our problemās
Morning Colin
Just a quick message to see if the PREGABALIN has made any difference yet as Iām seeing my GP tomorrow afternoon . My pins and needles and sensitive skin are up and down at the moment. Go from what I class as my standard/ regular pins and needles to quite intense !
Richie
Soā¦ my GP started me on a real low dose even through the stroke DR recommended 300mg a day. For the first two weeks Iāve been on 100mg this had little or no impact at all. Since Wednesday Iāve been told to increase this to 200mg a day. I can now feel a difference not in tightness of my muscles (well the feeling of them being tight) but definitely reduced pins and needles as they basically numb you or thatās the feeling I get an hour after I take them. They are STRONG and make me feel slightly stoned for an hour or so after I take 100mg once in morning then around 100mg at night.
Its still to early to be fully convinced of these but if its the pins and needles you want to reduce i think these will certainly help.
Hi Colin
Yesterday GP has put me on 150 mg PREGABALIN ( 3x 50mg) per day so Iāll see how these work for the next month and she says always start on low dose before increasing if necessary
Fingers crossed theyāll numb the dreaded pins and needles
Richie
Great. I really hope they work for you. Iām now up to 200mg a day so they are seeing how it goes with me. Keep well mate and keep me posted as I will you.
Iām doing 300mg a day as a 150mg dose morning and evening. After a week Iām maybe seeing a slight improvement in the burning feeling in my hand and foot.
It also has anti-anxiety properties so that canāt be bad
Hi Colin
Just an update on the stiffness and numbness, mine seems to be getting worse it is now in my shoulder and neck also my arm is now starting to ache this is after nearly 5 months post stroke, so I made an appointment with the GP, and he said he thinks its nerve damage and increased my amitriptyline from 10mg to 20mg and said he wonāt change my medication. He said he is going to write to the stroke consultant for him to advise me and just wandered if you were experiencing the late problems I am getting and is this supposed to the normal.
Steve
Hi mate
Nothing worse for me seems level with no worse feelings shoulder is sore a little but other then that no change. On the pregablin which seems to be helping but stiffness still the same. Still very early Iām 4 months post stroke I know I need to give it more time.
Hi Steve
Iāve still got the stiffness down my left side ( no worse but no better after 5 months) and recently my left side of neck seems to have got stiffer.
I was on Amitriptyline but came off them as pins and needles seemed to get worse.
Iām now on pregabaline but think thatās for pins and needles
Richie
Think the hardest part for us all is why does it feel like we are getting worse. At the beginning my recovery was flying and everyone was wow your doing great. Then 4 months later I walk with a limp which I didnāt have and the stiffness which wasnāt there is now there and nothing seems to make it better. Pins and needles also worse.
Doctor tells me I need to give it time. Which I am willing to do but you always have a worry is this going to get to a stage where I canāt look after myself and meed a wheelchair or something like that.
Stroke doctor just told me get on with life get back to work etc and that Iāve been very lucky. Doesnāt feel that way but of course I know there are many worse then I am.
If I donāt get any worse I can deal with it but when you read others stories this seems a little like hold on put your life on hold as this is just the beginning and your going to get a lot worse than this.
Hi Colin
It a strange one because from the outside everyone I meet all say how well Iām looking and that they canāt believe Iāve had a stroke however you and I and anyone with similar symptoms know that is not the case. To be honest my pins and needles are getting worse as is the stiffness in my upper left neck so Iām hoping after a couple of weeks of taking the PREGABALINE that they will ease the uncomfortableness. Itās hard to explain to people how these symptoms we have are and even though I would say itās not painful they are just very uncomfortable to live with day to day. Stiffness in the rest of my left side and muscles is still there no better but no worse but definitely worse than it was 3 weeks after stroke.
Stay strong and keep thinking positive
Richie
I think the unknown of how bad its going to get is though to deal with. Where does it stop getting worse. When are the symptoms going to be level no worse or no better. I worry about the end game.
Like weāve had the stroke but now itās like right now deal with this.
Sorry my last post was really quite negative ifs been a long day today.
Iām going to come off the pregablin as it feels like Iām worse on it particularly balance wise as it seems to numb my leg meaning it feels like itās not there If that makes sense so Iām feeling very unbalanced.
I have a slight pain in neck and shoulder but that has just appeared over the last few days. Iāve been taking 200mg and itās not helping.
Once again my apologies for the negative post just been a long day Today.
Hi Colin/Richie
Iāve reduced my amitriptyline to 10mg myself and feel a little better but what I want to say is my GP said to me on my previous meeting try to lead a normal life ang go back to work if I want on light duties, I am a house builder with my two sons and light duties does not exist when you have your own business. I went into work for one day to operate the 360 `digger only to find myself badly for the following 2 weeks, so on the last visit to the GP his comment was it maybe too soon to go back so try again in two months, so it seems like trial and error for us and take every day has they comes. Hope things will improve for us all and keep our little group updated with any news
I have to say my GP has been great not at the beginning but really stepped up. It was pretty odd when I mentioned the PREGABLIN She was mot convinced at all. I donāt have pain i have stiffness in leg and arm but itās more uncomfortable than anything. So I think she was wondering why prescribe a drug that suppresses pain but she didnāt say anything as the stroke doctor recommended them but she hummed and hawed about prescribing them.
My stroke doctor was the same yeah get back to work get on with your life. But emotionally I donāt feel anywhere near ready let alone the fact of stiffness in limbs etc.
Iām due to see her next week as my sick note runs out 24th Oct.
Steve you have a physical job how the hell could they expect you to go back so soon sounds madness.
