Hi, i have on only just found this group. I had a stroke 8 months ago. I was in a wheelchair for about 8 weeks and thought i would never walk again. However, i found a lady personal trainer who comes 3 times a week for a physio session. I actually love the sessions, but i’m at the stage where i am unsure about progress. 1 still have extreme nerve pain at times and wonder if the execise makes this worse. I would also like to know if anyone else has this problem and how long does it last. Does it get any easier? Thank you for your time
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I didn’t have nerve pain, but I did have muscles spasms. CBD Oil drops under the tongue helped me with that. I know some people use it for pain also. Always check with your doctor first. Both my GP and cardiologist were good with it. Hope you feel better soon. 
Jeanne
thanks Jeanne. I also have muscle spasms, but its the nerve pain that is extremely uncomfortable. i might give cbd oil a try.
thanks again
Graeme
@Graeme01 hi & welcome to the community. Sorry you’ve had a stroke & are experiencing nerve pain.
Have you spoken to your GP or consultant about this? They might be able to offer some insight. Has your physio offered any suggestions? I wpuld imagine they wouldn’t get you to continue with anything that would make you worse.
Hope you get some respite from it soon. Sounds like you’re progressing well otherwise.
Best wishes.
Ann
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Oh the relearning to walk…that for me, was the hardest. At first it hurt so much to stand, then to try to walk, then to actually walk. But we did it. And it got easier, gets easier. For me, I believe it always seemed worse for awhile before it got better. I also have nerve pain and some spasms. The nerve pain is worse, but I am telling myself it will get better as well. I hope so. if Gabapentin is for nerve pain, it doesn’t work at all for me. For the spasms, I have to use my mouth to tell my brain to make it stop, or sometimes slap my leg to make it stop. Only twice has it been so bad my toes were clawed up and stuck that way. I massaged them out of that position. It took a while and truly hurt. I want to give you something more positive, but I also want you to have the truth. I have not spoken with my doctors about it because I have dealt with it so long, I doubt they will think it is as bad as it is. A heated blanket helps with the nerves, but I must also have a fan blowing on me as my good side gets too hot. That is the only real relief I have found. Doesn’t go away completely, but enough to sleep some. Hot bath helps as well. I love swimming but that doesn’t ease the pain, but does make it easier to move without worry of falling, so I can be more flexible.
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Hello @Graeme01
Welcome to the forum.
You’ve landed in the best club in town without a queue to join !
The folk here have a visceral understanding that you won’t find anywhere else. They have an understanding about it complexities that the medical staff face as an implacable wall without the lived experience to turn into transmittable advice. For that reason you need to be your own recovery director and draw on the ‘point experts’ to weave into a program of post a stroke capability building.
Your abilities will continue to improve post stroke as long as you put effort into it. (Anybody who tells you that there’s a plateau beyond which you cannot progress either doesn’t know what they’re talking about or has other motives.)
The first few months will be the regaining of capability that wasn’t destroyed but was damaged by your stroke alongside neuroplasticity which is lifelong.
There are lots of good posts about pain management. This thread
https://forum.mystrokeguide.com/t/central-post-stroke-pain-again-sorry/34560?u=simoninedinburgh
is demonstrative of who the folk who seem to have the most experience to share . It’s got quite a few links to outside resources as well. I recommend using the search bar at the top of the page with magnifying glass and learning how you can search for keywords and contributors because everything you’ll ask questions about has already been discussed by others.
That being said this is an excellent place to ask questions, rant when you need a cathartic release, compare notes, benchmark progress, celebrate victories, share community.
I guess you’ve already discovered the post stroke capability journey is one measured in quarters years rather than weeks and months. But there are many twists in the road; For example your pain may be caused by tendons and muscles and nerves that are shortened while not being used and therefore need to be stretched out, by them feeling tired after you’re stretching, by the misinterpretations of signals in your newly rewiring brain, a sign of complaint because your gait & other movements are not turning muscles on and off ‘correctly’, and a host of other reasons which have parallels in other dimensions such as emotions eating and sleeping patterns, response to light sound and people etc ad nausea
There are threads on here, and in most other stroke forums - about how life after stroke has elements that are better than life before a stroke. They all reflect that generally one makes better progress looking forwards to what one can aspire to rather than backwards dwelling on loss.
Ciao simon
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Thank you Simon. I’ve really only explained part of my situation as i didn’t want to bore people to death just yet. I’m a UK citizen but a Spanish resident. Ive lived here for 8 years and speak a little Spanish. Enough to get me by on a daily basis. However medical understanding is often very difficult. I had my stroke 8 months ago in Spain. I have progressed significantly and walk reasonably well and can confidently drive. My main issue is my left arm and the pain that i suffer is almost constant. I’m on Gabapentin but im not sure it helps nor am
I sure what dosage i should be using. Originally my Neurosurgeon prescribed only 1 (360mg) at night but that did not help at all. I tried 1 at night then 1 in the morning but i then found that the pain was unbearable during the day. The medication was prescribed originally by the hospital but more recently i saw the local GP who had to look up Gabapentin on his phone. That didnt inspire me with confidence. I’ve literally had to decide myself what i should take and when.
Thank you for you comments and direction. The opportunity to talk to others in a similar position to myself has not been lost on me.
I look forward to further correspondence.
Thanks again
Adios
Graeme
Hola @Graeme01
That search icon at the top of the screen should be your friend!
Search for your meds and you’ll see what other people have had to say about them . Search for your condition and you like wise have insights from another perspective
I had terrible pain in my affected shoulder some months after my stroke. it was relieved in the space of about 3 weeks by manipulation by an physiotherapist who knew what he was doing I think he only manipulated it twice and I did stretching a movement exercises the rest of the time. What worked for me is no guarantee for you. The complexity of the combination of circumstances is so great. But medication to mask a pain isn’t, from a philosophical point of view, my preferred start point. My wife puts it down to just blokey intransigents about taking medication 
Yeah the idea that the doctor looks up something is common as gabapentin on a mobile phone doesn’t really inspire confidence. Then again pretty much everybody I run into from medical professional point of view strikes me as having deep understanding of a narrow unintegrated area where I need a broad integrated understanding. Reading these forums post stroke has told me that the six or eight times I went to the doctor in the 2 years before I had it because I was feeling a bit odd I was having TIAs but yet none other GPs picked it up they sent me for hospital tests but the wrong ones then when I had a stroke I didn’t get thrombolysis .
It’s just inverse serendipity. The way to generate a bit of luck is to do a bit of research. This forum represents a lot of experiences from which it’s possible to patch together plausible approaches. Being able to speak with a medical profession about those plausible approaches does require their openness and in your case fluency in a shared language!
I guess on the bright side vitamin d isn’t a problem for you whereas for me in Scotland you have to take it as a supplement!
Simon
Hi DeAnn–I’ve mentioned this before, so perhaps you already know about it. I have heard CBD oil drops helps take the “kick” out of the pain. I don’t know about that. But I do know it was the only thing that helped my spasms. Gabapentin didn’t do the trick for me either. Check with you doctor first–my GP and cardiologist were ok with it. ANd use a reputable firm. It can be ordered over the net, and there’s info on dosing on the net. It says to start low–say 8-15 mg. and work up by small increments if it doesn’t work. For me (125 lbs) , 20 mg worked. After 45-60 min if no relief came, I took another 20 mg. That always worked for me. I wouldn’t get another spasm - and could sleep through the night. The next night I ight get the spasms again, so I would repeat. Over the months and years, I began to need the CBD less and less–now after 5 years, I use it almost never. But I keep it by my bedside for the occasional spasm( maybe 1 every few months. ) I also take magnesium glycinate, which is good for muscle spasms. My best to you. Jeanne
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Thanks again Simon. I’m beginning to find my way around. As you said there is loads of info and i’m so glad i joined. I don’t feel so isolated now.
As you said vitamin D is in abundance, but the heat this year has been extreme.
Thanks again for your input.
Graeme
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Thank you. I did try gummies, but they are also +THC. I haven’t tried them enough to notice if they are working. They do put me to sleep, though. I might be able to afford CBD oil, and that is legal here, but I will have to order it as I have no way to go anywhere to purchase it.
I am going to try a balm made from mostly goats milk that they sell at hospitals here for the burning pain of chemotherapy. It has shown good results, and an old friend I used to go to church with makes it. I would never have known had I not seen a news story about it. Perhaps it will work with the constant freezing hot/burning cold, tingling from stroke? I hope so. I am so glad you found help.
That might have been the BNF your gp was using to look up that medication. It contains all major drugs and medicines in use in modern medical practice, and all medical practitioners have access to it. It comes in both digital and print formats and updated yearly. It’s a blessing now that they can access it digitally as it’s far quicker to lookup and no risk of pages getting torn…they were a thick book and the pages were practically tissue thin. My sisters used to be nurses and they always kept a copy the old edition at home, came in handy a time or two.
Medical practitioners can’t possibly be expected to know every single drug and medicine available as there are just too many of them. Used to be every GP’s bible.
British National Formulary (BNF) Key information on the selection, prescribing, dispensing and administration of medicines.28 Jun 2023
[
BNF (British National Formulary) | NICE
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Thanks Ann. whilst i’m a Uk citizen i am a Spanish resident and i had a stroke whilst living here, about 8 months ago.
i have the added problem of the language although i can speak Spanish.
i was originally prescribed Pregabalina Kern 25mgs however i had serious emotional issues with thoughts of suicide, so stopped taking them.
i am now on Gabapentin and i have a review with my neurosurgeon on 7th August. So i guess we’ll see.
Other than that i have a physio who comes to my home 3 days a week and puts me through my paces. I have made lots of progress, but still a long way to go.
thanks
Graeme
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Hope your appointment with the neurosurgeon goes well for you @Graeme01
Good to hear you’ve made lots of progress & i’m sure you’ll continue with that progress.
Regards
Ann
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Hi DeAnn–I always ordered my CBD oil over the net and had it delivered. I always used the kind that did not have THC, or else it was less than .02%, so not odd side effects. The gummies taste good. But the CBD oil was more like I tolerated it like taking medicine–they say the under-the -tongue drops are really good for absorption. And you’re supposed to hold it under your tongue as long as you can before having to swallow, to maximize absorption. Mine cost around $100 USD for 1000 mg of oil. That seems like a lot, of $$, but since I only used 20-40 mg an episode(usually once a night), it lasted me a month or two. But–after a few months, the symptoms began to calm down, so I was only buying a bottle every few months. Looking at it that way, it really wasn’t too bad.The goats milk sounds interesting. I’ve never heard of it. Good to know. Jeanne
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Shwmae @Graeme01, after three years rebuilding my life after stroke, I have discovered that there is such a thing as over-monitoring progress that is akin to clock watching. I kept a diary which allowed me to look back over a year, it was only then that I saw the progress I had made in a better digestible way. I improved maybe 1-2% each month, but a year equated a good twenty percent improvement. I’m the type of person when faced with a prolonged arduous task will get itchy to move on about halfway, especially if it is something that takes time and patience to complete. As a recent analogy, I’m unstitching a seam on a hat at the moment. I started with vigour, thinking that this will be a relaxing exercise, just sit in a chair of an evening , and work my way along the seam. After about fifteen minutes, I looked at the amount of stitches I had left to pull and I thought to myself, “This is going to take forever.” I found that the most productive way to do it was to just get in the zone and enjoy the physical rhythm of it. It didn’t stop me from thinking “Oh gosh there’s more to do,” when I discovered I had to unstitch the other side, but it was then a case of getting back into rhythm and putting those thoughts aside. As a result, having completed the task, I was most happy with my achievement, and I feel this is a bit like stroke rehabilitation. Get into the zone of what you are doing, and celebrate the milestone when it becomes clear that it has been reached.
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You mentioned in your message you have muscle spasms and use cbd could you tell me where you purchase it as i have the same problem but the doctors just tell me to take asprins.
Hi Brenda-- I order my CBD over the net and have it delivered. Since I live in USA, I don’t think they deliver to UK. Anyway, I have bought my CBD from FAB CBD. I have also heard that Joy Organics is good. You can probably research to find which companies are good where you live. Also, there is a lot of info on the net as regards dosing, THC, broad spectrum, and all the terms you’ll come in contact with, etc. Can’t believe your doctors say to just take asprins. Even gabapentin didn’t help me, but CBD did. They say to start with lowest dose and gradually try more until you find what your body/brain needs for relief. (It takes me @ 45 min to an hour for it to kick in. I’d take 20 mg. and if no relief after 45 min, I’d take another 20mg. That always worked. Had to repeat the next night.) Good Luck! Jeanne
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Hi Greame, thanks for reaching out. Pain is something very common after stroke, I am sorry that I cannot provide a definite answer. Rather, I would raise some questions . Your personal trainer, is she a qualified physio? What is the cause of pain, posture? Muscle tightness? My client complained of shoulder pain, which went away after I worked on sit to stand. So suggestions of medication and other forms, is one line of treatment, but my personal preference is hannds on approach and I normally get great results. I am just trying to present another point of view. Depending on the cause of pain exercise can help to reduce but at the same time can also increase it, if exercises are not carried out carefully. Sorry for being vague, but it is a very complicated issue. The cases where my approach works, I have been called magician but not always Wishing you all the best. Take care, Kusal, Stroke OT
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Good morning and thanks for contacting me. The physio i use is qualified and to br honest i wouldn’t be whete i am today without her. The pain i have is primarily nerve pain. My thigh feels like someone has tied a rope around it as tight as possible. My shoulder is tight along with my left lats. I get a slight relief from Gabapentin but nothing to excited about. I see the doctor from the hospital in about 1 weeks time but dont hold up much hope that anything new will be suggested. I think i may have to try cbd oil as I’m losing hope that anything prescibed by my doctor will help
Again, thank you for your post. Its good to get ideas from others.
Graeme
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