In 2023 I wrote about being fed up and in 2025 I still am.
I am fed up with constant headache, tinnitus, chest ache, pins and needles in arms and legs, weakness in legs, that are regular things occurring (fatigue is constant so didnt add it).
Been to the GP surgery numerous times, tell them what’s going on and usually if you mention chest ache- they switch to saying you need to go to A&E. I explain it’s an ache not a pain but have attended to have them take blood down ECG ( I have permanent AF, so know the result) tell me it’s all okay and send me home.
Back at GPs I have said can I have a heart scan, MRI of the head, CT scan all responses are no.
Try telling them to have these aches and pains regularly and it makes you miserable and they nod sagely and wait for you to leave.
If this is the care that is available it’s looking grim going forwards.
Well done. By getting it all written down and telling it like it is you are allowing yourself a good look at where you are.
You are not alone but some suffer in silence which compounds the issues.
I’m in my fourth year and recently have been going through a bad patch that I hope is coming to a close.
Over all I feel I have made progress. Life is worth living with its little highs little lows.
I think it is a mistake to pretend all is well and having a good moan about those real problems gives a much needed opportunity to blow off steam.
No one endures disability willingly. Given the chance we would all revert to how things were. That doesn’t mean we don’t get to see the funny side of things or have a chance to enjoy something special.
Take care buddy and my best wishes to you.
Never be afraid to speak out.
Hi @Al59 sorry to hear things aren’t really improving for you. Such a shame that your GP won’t refer you for other tests. I assume they say it is stroke related & no point being referred. Have you tried asking for a neurology referral? Do you still have access to the stroke team? If so see if you can get back to see them.
It can take a very long time for.symptoms yo ease after a stroke so there is still hope that they might improve and I really hope that is the case for you.
Hello @Al59 - I don’t believe we have met. Nice to meet you.
Having read your “moan” last night, I decided to sleep on it. Sometimes I find this helps me think things through
Two years of being fed up doesn’t sound like fun and I wonder if you might benefit from trying things you might not have done already. I haven’t had a chance to go through your historical posts and am only going by this current post and here’s what I think.
If your GP is not showing interest, you can let them know you are not happy and that you would like them to do something. Ask them what their complaint procedure is and if you feel strongly lodge a formal complaint.
If you are able, go to A&E as your GP suggests. I appreciate this might not be easy, but if it is something you can do, it might be worth it.
When you tell your GP something and they nod sagely and wait for you to leave, don’t leave! They will then have to do something.
These are just things to get you going.
What other support options do you have? Can you talk with family, friends or Stroke Survivor groups?
Are you doing any activities that might help you take your mind off things?
Going out for some fresh air, for a walk to get some oxygen into your lungs etc. will be beneficial.
What about diet?
Are you eating healthy?
Are you properly hydrated?
Constant headache? Are you possibly dehydrated all the time?
That’s pretty much all I can think of right now, but I do feel there must be things you can do - maybe you can make a list of things to try and then try them and tick them off as you go along.
Talking to members of this forum or indeed the Stroke Association help line almost certainly will help.
I, along with my partner or sister walk our dogs 3-4 times a day (about a w0 min walk) I have various hobbies (currently planning a christmas village tree).
I will apply a more forceful, but respectful, approach to my doctors and see where it leads.
Remember, you are perfectly within your rights to expect a good service from the NHS doctors and if they come short there are things you can do to lodge a complaint.
Also, and this might depend on the local situation, you can find another doctor and see of they do a better job.
You might also want to suggest getting a second opinion etc.
You might want to look up your GP service on the Care Quality Commission website to see what sort of rating they have - it might help you understand a little bit about them.
I will chip in two things that helped recently with my care. My twice a day Baclofen 10 mg dose was not enough to relieve post stroke stiffness, pain, on my left side . I researched it, then tried 3 doses 4 hours apart 8 am, 12pm and 3pm. It helped and I kept a record with BP readings and how I felt. I photoed the record after three days and sent it to her. She agreed to three doses. Then to deal with the aching, pain, electric stabs I get late in the day I tried a half of a Tramadol 50 mg at 3pm to see how long it lasted. I had a few left from a hip replacement. It allowed me to go out the dinner that day and not be suffering for 4.5-5 hours. Then I went to see the pain Dr who treated me with my hip. He listened and agreed to treat my post stroke pain and to give me a small scrip for tramadol 50 mg that I split and use when there is a day I want to do something special late in the day and am so terribly uncomfortable. He knows me and trusts my useage. Had I not gone in with a verified plan the drs would not have come up with this. As an aside…we do not have a stroke team here in this area of Montana other than the hospitalists who do not do patient care outside the hospital . So this site has been my saver in learning and thinking of possibilities.
Let me add I am not advocating messing with your meds. I did it in desperation and only three days before talking with drs. I had also just had my physical and other than the weird alien arm I now own all was good. I had also used Tramadol for years with the awful hip issues so he knew how it worked for me without any side affects.
I had my stroke as far back as 2017. I had gait ataxia and occasional epileptic seizers.
I was OK with the gait ataxia while he in effect dragged me along as he held my hand.
Recently I had three falls and if it wasn’t for passing members of the public I don’t know what I’d do as my husband couldn’t get me up. This year I use a walker and I’ve recently got a scooter. I still have an annual seizure. So for me my ailments have not improved though they are nowhere near as bad a some of you.
So sorry you are feeling like this. My husband feels like this most of the time and I do all I can to chivvy him along but some days nothing works.
Today we went out in the car, a nice long drive through the countryside and to a place we had not visited before together. He got sad when he recognised the many bends in the road as he remembered riding his motorbike around there not so long ago and will never do that again. He misses that and also driving and horseriding. He wakes up most mornings aching, gets headaches, now wears hearing aids and takes a cocktail of drugs and often says he wishes the stroke had finished him off as it’s no life as it is now.
I don’t suppose this has helped you but at least you know other people often feel the same. Our GP Practice is hopeless too!
Firstly like my wife, you deserve medals and our deepest thanks for putting up with us.
I can admit to some mornings when I wake up (I have always slept well) and realise what the day is bringing zi xan think oh sodding hell here we go again.
I am getting angrier with the GPs who dont want to do anything test wise, and I sometimes think they would like me to go private to get answers and save their budget.
I can hope , for all of us, that there is a change in medical thought to help us move forwards.
