Good morning to my lifelines. To add to my saga of a 7 year struggle dealing with PMR 4 weeks ago I got out of bed and couldn’t bear weight on my left leg. The pain and weakness was mostly coming from the outside of my left hip where the bursa is, but there is no strength in my hip girdle. Luckily, I now have a good email connection with my rheumatology nurse as I am on Leflunomide so a hip X-ray was ordered quickly. This was the report
“X-ray of her Pelvis was reported as- Hip and SI joint spaces appear preserved bilaterally with only minor degenerative ( wear & tear) change . No Peripheral vascular calcification’s noted”
The recommendation was to do hip exercises but none were suggested.
Incidentally, I am on the waiting list for an RFA on my SI joint, my second in 4 years. The first was very successful. So my pain dr seems to think I have SI joint issues. Lumbar MRI shows multiple degeneration and narrowing. I had back surgery 8 years ago on L4/5. But this really feels like hip and pelvis.
An update is that after four weeks on Leflunomide my LFTs went up so I have to stop Leflunomide for two weeks, then retest, then start every other day if OK. This hip thing started when I had been on Leflunomide 4 weeks when the hip went.
I just don’t know what to do. I can’t get in to my GP for a month! I am on 17.5 Prednisolone. I was tearfully looking at walkers and electric scooters today because I can’t get anywhere. But apparently there is nothing wrong! Any ideas very greatly appreciated.
Written by
Nightingales
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Do you live alone? How are you coping moving around at home? Personally, in that situation, I'd have called 999! Particularly if you can't see the GP for a month - which is utterly ridiculous.
From another point of view - do you wear glasses? Have a hearing aid? If you can't see well, everyone accepts wearing specs, at least to read, some idiots won't wear distance specs out of pride but that is another matter. Using a walking aid, whatever sort it is, has a role if your mobility is affecting your day to day living. I went for a walk yesterday - and took and used a crutch because my right knee is playing up for some reason. I walked over a mile fine as a result, I wouldn't have risked it without the crutch in case I got stuck.
I have an electric scooter in the cellar - untouched, never used. I spent all summer trying to persuade OH to consider one and, being male, he suddenly decided in October he would get one and we headed off to Munich to buy it. A week later it was too cold for him and after Christmas he fell and had a spinal fracture. By the time he could manage for pain Covid had arrived. Then he was never well enough again. But it is there and I will use it if I need to - if nothing else, it will be great for shopping without using the car!
Thanks for your quick reply PMRpro. I live with my husband and my home has lots of things to hold onto and I have a stick so I am hopping and coping. Up the stars on my hands and knees 😊 I just can’t understand it. It doesn’t seem to be PMR on the high dose. Previously I couldn’t walk far but that is because of back pain, but I was managing a fairly normal life. Now I am disabled for no apparent reason. To add salt to the wound, my spine Dr had requested my surgery order a cervical spine MRI (apparently it has to come from the GP now). But I just received a text saying it will have to be ordered by a dr who knows me well so I will have to wait until my apt. I have seen this Dr once! My excellent GP retired. This from a surgery that was once excellent and voted the best in the County. Unfathomable.
Well I wouldn't accept that! In fact, I might even demand a home visit. At the least you need crutches for safety - if you fall that could be a broken hip which is potentially serious. I had crutches for a knee injury - here we pay a deposit that you get back when you return them. Best foregone 20 euros ever!
I agree with PMRpro - a month is far too long to wait! However I do not know how to get services in your area to respond - surely your GP surgery must have urgent appointments??
If all else fails and you feel the need of equipment, you may be able to hire or buy it from the Red Cross. I did this recently for a friend and they were very good. He was terminally ill and I was (and remain) disgusted by the lack of attention from his surgery.
Finding the right drs is the problem , I have lost all faith. The ER is at a crisis point.I’m was there at Christmas with possible GCA. I was just sent home and instructed to come back if my sight went! It was like Dante’s Inferno. I have moved from a big proponent of the NHS (I am a retired nurse) to an old lady afraid to go to hospital.. But, I will keep on trying to sort it out .
Hugs to you Nightingales….know how you feel. My daughter is an NHS matron and I worked for many years in a hospital- the current state of affairs is shocking 🤗x
Your daughter has my admiration. Hope they get their raise and better working conditions. My GP surgery is an enigma. Still the same number of GPS and NPs but when I go the place is empty. Where are all the patients they are too busy to see.? 🤷♀️
I have to say I do worry about her stress levels sometimes (well, most of the time). She says she’d be more stressed if she weren’t working in her role, though, trying to improve things….🤦♀️
As to where the patients are in your surgery, it’s the same at ours. I have the impression that most of the doctors are working from home on telephone appointments - I only ever go to the surgery for blood tests or to pick up meds 🤷♀️
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I am still here my friends x
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