I suppose a positive is im not getting any worse will be 6 months since the event early december. The stiffness statred 6 weeks after stroke calfs thigh foot toes etc. I am managing to walk but with a recently developed limp. On pregablin 150 was on 200 but felt like complete leg numbness so reduced it to 150mg. Dont feel its making a difference at all. My mood is really low and to many issues to talk about. I did walk 1.5 miles today. The thought of going back to workin January is absolutely freaking me out. I went on a cruise withmy wife it was a disaster 6000 people on the ship my mistake booking it as a suprise for her. Panic attacks and anxiety everyday. I have to keep positive we are all amazing i go from one day feeling ive got this to the next day feeling like i just want to cry all day. We are all amazing all of us. Sending my love to everyone
Can anyone tell me if the professionals you work with seem stumped by this stiffness that just does not let up or respond to any medication? My pt noticed today that I have developed a more awkward gait and took me off of the treadmill as it was āclunkyā. This just does not seem to get better and I even received a lot of massage. I was walking better months ago.
Some of you said your doctorās seem to think it will get better with time. Almost eight months over here and my symptoms are identical in presentation, despite great progress initially, and time experienced (several months later)
Hope the Dr who said time is right. Canāt see how people can be expected to live with this feeling.
Exactly the same for me . Stiffness tightness numbness and pins and needles in foot hand and joints has become worse 7 months post stroke. Medication doesnāt seem to have any effect 450 mg pregabaline per day . If anything since I started pregabaline 2 half months ago Iād say the symptoms above have become worse !!
Hi Richie
Thought I would let you know my symptoms have worsened and i now have a very stiff shoulder .I now wear a body belt for my lower back pain which seems to help also got an appointment with the consultant on Tuesday about my future medication, so I have a list of questions to ask him and I will let you know how I got on and letās hope 2023 is going to be a lot better for all S/S. Two other things tried to go back to work 5 weeks ago and lasted 1 day this set me back at least 6 weeks and my memory brain fog is not getting any better.
Happy New year to you and everyone who on this Web site
@Richie1@monk2316
Iām not happy to hear that you are experiencing the same thing, however I am now less inclined to think I have post stroke parkinsons as my range of motion is good despite the horrific stiff feeling. I can see this rigidity increase does happen. Hoping the best for all of us. To me itās super distressing to get worse while working so hard, and Iām sure you feel the same. Iāll be here to lend an ear and celebrate any measure of success with better walking and reduction of symptoms. I think Iām done turning to doctors as they simply donāt know.
Wanting to know if anyone has heard new things about intervention for this horrible stiffness, and slight walking regression/limp? I have been referred to yet another pain Dr but am starting to feel very discouraged-something I didnāt even feel when partially paralyzed! I also do not see any long term sufferers of tight band stiffness express ātimeā eventually healing, (except for @Loshy who I believe stated about 14 months(?) #desperate for anything to look forward to. )
Hi Mbhope / Richie1 / Colindlynch
I had an appointment today with the Consultant regarding medication and stiffness and the results are the following. The stiffness in the muscles is caused by the brain, is confused as it is sending messages to the affected area but the pathways are broken so the nerve/nerve endings are not receiving messages until new pathways have been created which takes time and patience, he said its natural to panic but the stress of worrying does not help and the brain which needs to learn new pathways.
He said the medication is to try and help with pain until the brain learns new routes and I have a further appointment in 2 weeks to review my medication as he has altered it.
will keep you all updated
Good Luck Steve
That does make sense as the muscle relaxers do not work because itās coming from the brain. I sure hope your Dr is right about eventual progress. The information about central post stroke pain is not promising so I would rather believe that the brain can build new pathways.
M hope/Colindlynch/Steve
Steve thanks for that update
What I find hard to understand is that for the 1st 3 -4 months progress was great then in the last 2-3 months stiffness in the muscles and joints has increased. My sole of my left foot also feels like the skin has been pulled tight as well as the numbness and pins and needles!
Surely the pathways were the same broken pathways in the early months as they are now so why has this stiffness not been constant all the time!
Iām on pregabaline to try and help the numbness which is really becoming quite annoying and not pain relief as Iām not in any pain , however donāt think the pregabaline is doing anything. Also canāt seem to get any answers from GP or any medical profession. Frustrating to say the least ,
Hi Richie we must remember the following ( The most rapid recovery usually occurs during the first three to four months after a stroke, but some survivors continue to recover well into the first and second year after their stroke ) so I think itās going to be a long journey for our little group but I do believe that if we stay positive and try, we will make it to the end of the tunnel
Good Luck and stay positive Steve
I do have the same question about new pathways. When the tightness emerged, I was told āthings were coming back on board and that was goodā, however I had already been walking for several months so it made no sense. As I said before, I really hope this isnāt some form of central post stroke pain, but more than anything I hope this goes away for all of us. Sometimes it feels like literal torture!
Sorry for all these posts but this person (open below) talks about ātight band stiffnessā being that pain condition. Itās not typical but this does concern me. Iām open to consider otherwise though. Relief for all.
I canāt believe that a doctor, or even anyone else with an ounce of intelligence, thought that it was OK for someone who had had a stroke to go back to work as a builder- itās hard physical work and very skilled. Weāve recently had an extension built and while Iām enormously grateful to the guys who did it and admire their skills enormously I have to admit that I wouldnāt want anyone with a brain injury operating a digger anywhere near my house thank you. I can see that it might be good to have some occupation rather than dwelling on the pain, but surely something less taxing would be better. I did know a doctor who had a stroke and he retired (he was lucky enough to be able to) and took up art history - the last I heard he was still, 18 years on, doing very nicely at it but my point is he wasnāt expected to do anything as taxing as his previous job.
I am 16 months post stroke and continuing to experience mild stabbing pains, particularly when cold. Looking at that article I think that they probably are post stroke pain and I will mention them to the GP (a very helpful and kind person but not a specialist) but doubt that she will be able to do anything about it as Iām not keen to take any more medication for fear of the side effects - Iām quite wobbly and tired enough without pregabalin!
Just to update you all, I had an appointment with a pain nuerologist yesterday who diagnosed my upper extremity as complex regional pain syndrome due to the discoloration of my arm and normal EMG. Next step is EMG for the leg.
Thank you @Loshy , I have had massages from the pt. They feel great during, even if the tingling increases, but nothing as far as lasting afterwards. I will try at home as much as possible.
Hi all
Just a quick update.
Due to increased pins and needles and numbness on affected stroke side peticularly left foot along with stiff hand joint my GP is weaning me off pregabaline and going to try me on gabapentine. Not sure if this is going to be any different but can only hope.
Had a bit of an episode 3 weeks ago when one evening my left side suddenly went a lot stiffer and pins and needles increased so at 10 45 pm on a Friday evening decided to go to A&E. After 14 hours !! Sitting on a hard plastic chair in the waiting room I finally left at 12 45 pm Saturday lunchtime!! They think it was down to coming off the pregabaline along with cold weather and possibly over doing things. But 14 hrs was ridiculous. I do value the NHS but it is very very broken
@Richie1
Fyi, I also had a recent increase in stiffness/pain which I was then instructed to go to the ER for. I wound up getting admitted for observation weeks ago and had more scans and another MRI. Nothing new, but I have now been prescribed Lyrica since the gabapentin doesnāt work. Truth be told I havenāt even picked it up yet and am not too hopeful. My outpatient therapy place told me that they just received a new patient with the same complaints as me a yr out-walking seeming to get worse, and increased pain/stiffness. They are blaming it on where we both had the stroke,the thalmus. Either way this does seem to happen to some of us. I am interested in hearing about how everyone else is coping. Please continue to update
Hi Richie,
Have you found anything yet to help with the numbness please.I am now 3 years post stroke and feel my symptoms have been getting worse for the past year but canāt seem to get any explanation for this.I would appreciate any suggestions.
Thanks
JMP
Relief for all.