I am back again!

[doubtfully]

Good morning, well, firstly, thanks everyone for your replies to my last post, really useful and supportive x

I've just had my telephone Doctors appointment. He advised me that he would not be giving me false hope and that pain clinic where I would learn through cognitive behavioural therapy , to deal with my pain, was the best he could do.

Basically live with it, keep taking Gabapentin and take more cocodamol if it helps and learn to think positively. A fat lot of use that is when I cannot get round more than 3 isles of the supermarket without sweating buckets with pain.

Ive been off prednisolone long enough that it won't be causing adrenal problems and I should not blame anything on PMR GCA when I no longer have them.

I have an appointment later in the month with a neurosurgeon who the (private health care ) general surgeon who was investigating my low level persistent anemia referred me to after he had seen the scan of my spine

NHS are saying unequivocally that surgery cannot help at all and it will only make matters worse. I don't know if there is a right or a wrong or if anyone really listens.

I feel like I am going round the bend, well past wits end and reached a total dead end, yes I know, I am indulging in self pity but ive lost my business which was equestrian based, I cannot indulge in my outdoors life style, I can't even walk my dogs as they are huge and have silly moments.

End of moan!

[PMRpro Ambassador]

Just one thought - most larger supermarkets have mobility scooters for use by customers. I was once told that every evening they must be driven around by a member of staff to run the battery down to be charged overnight - you are helping them by using one to do your shopping.

[jinasc in reply to PMRpro]

I loved the supermarkets mobility scooters in Sainsburys .............. but just give them a call. M&S have them in their larger stores.

Not meant for you but for the lady above. 🤔🤔

[Bcol in reply to PMRpro]

I used them when my leg was in plaster and I wasn't allowed to put it on the ground. The OH and me thought they were brilliant.

[walrond]

Why are you so sure that your PMR has gone

[doubtfully in reply to walrond]

Gps opinion is that you can only have it for 5 years. i’ve tried to educate ythem but no luck.

[PMRpro Ambassador in reply to doubtfully]

Lordy - do they think it comes with an alarm clock to tell it time is up?????

[Charlie1boy in reply to PMRpro]

I like that!

[doubtfully in reply to PMRpro]

You said the magic word "think" It seems to me that thought has been superseded by route learning and what ever the book said must forever be the one correct statement. I am jaded but not far from the truth.

[PMRpro Ambassador in reply to doubtfully]

A friend/colleague who has taught in medical school for years told me they don't learn physiology any more - they sit around in focus groups and discuss it! Which means they don't always come to the right conclusions

[Seacat30]

Have you taken the private route on all of this yet? The NHS told my sister that she had emphysema. She was horrified by this diagnosis for about 4 years, hiding all through Covid. She asked for another opinion. After using all the proper analytical techniques they swore that she only had asthma. Her outlook was transformed.

[doubtfully in reply to Seacat30]

My first instinct has always been to use the NHS first.

[PMRpro Ambassador in reply to doubtfully]

Sometimes these days there is a place for carefully selected private since it means you can go anywhere quickly. There are rheumies it is worth spending a couple of appointments' worth on and then let a GP provide the NHS stuff.

[Koalajane]

how awful, I have had it over 6 years and my doctor is happy to let me have prednisolone because he knows I still have PMR. The thought that it works to a timeline is ridiculous

[Grammy80]

Please, don't apologize for moaning...we all do and need to. I do hope you take the advice and check further. I personally am proof that pays off. Also...do take a scooter, it will bring your youth back once you get the hang of it, they are fun~! I do find I spend more~~it is so easy to drop things in the cart. My best to you.💞

[Pixix]

If I went to a supermarket I would have to use a wheelchair (I have my own). Haven’t been to a large shop in nearly 3, or is it 4 now, years! Recommended by GP to get all food delivered in winter when I have history of bad chest infections, & never stopped! It’s a cheap system, it works excellently, no driving, heavy lifting, loading & unloading car etc etc. yes, of course I miss looking & picking & choosing etc, but I could reach much from my wheelchair anyway!! You’re lucky if you can take Gabapentin without bad side effects like I had. Keep a watch on your mood,though, as that drug can have negative effects on it, when you’re already fedup!! I live in the New Forest & can no longer walk the distances we enjoyed. Sitting & watching is OK, but I’m only 66 & it’s naff!! cognitive behavioural therapy has always been on offer to me, so I went to a pain clinic. Appointment lasted5 minutes, he said I was already on Tramadol (car crash injuries), & I was overweight so I wouldn’t get anything else from him! He said Gabapentin can cause weight gain & I didn’t need that. I explained weight gain was due to frequent doses of steroids to treat lung infections. He said it makes no difference, I have nothing to help you. He refused to give me Gabapentin, my trial of that came 10 years later…& Pregabalin tried, too. I, too, have some problems with dog walking, young puppy on lead (chases animals!) but the OA in my hands is worst part of that, really! We used to go on cycling holidays in Italy & we’re keen mountain hikers in Switzerland each year. Sorry about your business, I took early retirement, but was lucky to be made redundant just before we made the decision that I had no choice. You will find ways to adjust your life, believe me!! But it doesn’t happen overnight, & takes work! S x PS sorry I didn’t see your first message…

[Sharitone]

On the subject of mobility scooters, almost against my will, I hired a small one at a wildlife park and it was wonderful, easy to control. I couldn't have managed otherwise, and would have ruined it for everyone else.

[doubtfully in reply to Sharitone]

I can totally identify with your comment "almost against my own will" somehow it seems like giving up when really it is just getting on with life.

[PMRpro Ambassador in reply to doubtfully]

And it leaves the energy for the things a mobility scooter can't help with!

[Sharitone in reply to doubtfully]

Yes, I had to swallow my pride, but really it was an opportunity, not a defeat.

[Karenjaninaz]

If you have anemia I suspect PMR is not gone; I had anemia with mine that went away with prednisone. Even my gastro concurred on that one. I felt terrible on gabapentin given for shingles. Rather depressed. Decent doses of Vit D elevated my mood. 2-4 k iu daily.

[doubtfully in reply to Karenjaninaz]

Thanks that's really interesting and useful, no one has linked my enemia with PMR. they have looked everywhere and I mean everywhere... for causes, and, at least I know mt gastrointestinal health is great! I will look into this further and hopefully put together a good case for it to my GP. Yesterday my mood was incredibly low but that was following a phone conversation when my GP told me my back was never going to get better and I had to get used to it. Today I will put his negativity behind me and wait to see the neurosurgeon next week. If he says the same then at least I won't be as shocked as I was yesterday.

[PMRpro Ambassador in reply to doubtfully]

It is the anaemia of chronic illness, particularly common in autoimmune disorders. That doctors didn;t cotton on to that makes me worried about the rest of their knowledge in this area.