Would love your expert advice: I have read a bit... - PMRGCAuk

PMRGCAuk

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Would love your expert advice

Sophiestree profile image
30 Replies

I have read a bit about posts regarding piriformis syndrome, but am unsure as to that is what my issue is. Basically since Wed I have had pretty bad issues with my right buttock, going up to lower back and down my right leg. I am unsure as to what I need, a physio, speak to the doctors, x ray? It gets worse with walking, which I notice is not what might happen with piriformis syndrome? To the point where I can hardly walk at all and I have major tourettes when I do walk! If I sit on a heat pad, that definitely helps and I can get up and walk gingerly to the loo etc. Stairs are a completely different story in being very tough. My right leg is slightly longer than my left hence I have always had back issues, but if I do my usual pilates exercises for that, it is just the right side/buttock that I feel. I feel as though my right leg has been pushed up into my hip if that makes sense. Haven't done anything new at all so a puzzle. Assuming nothing to do with LVV or pred/TCZ. I am on my last day of 12.5mg pred and start 10mg tomorrow for two weeks, tapering by 1mg a fortnight. Would appreciate any advice as to who I should contact tomorrow. Obviously the GPs surgery will likely tell me I will have to wait two days for an appt, but if i do, then sobeit. Thank you in advance.

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Sophiestree
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PMRpro profile image
PMRproAmbassador

familydoctor.org/condition/....

Judging by the stairs and walking problems I'd lay my money on sciatica due to piriformis problems. Can't imagine why anyone would think it improves with walking!

Sophiestree profile image
Sophiestree in reply to PMRpro

haha, that's good to know re improves with walking, or more like doesn't. I am really hoping it is that, as something suddenly occurred to me, due to my poor osteoporosis, if it was a minor fracture , I am not that stable due to the constant dizziness on movement, looking up, down, anything and i have to stable myself and end up in strange poses as a result.

I also got plantar fasciitis after Christmas, 2 months after diagnosis and the start of pred, which I have never had before. I bought crocs, as recommended by Kendrew, and they definitely helped and it has gone now.

Right now it feels like a brick in my right buttock and in my lower back.

Phone call to the doctor tomorrow maybe.... urghh I so hate ringing them, everything is such a chore.

thanks for the link.. very helpful

piglette profile image
piglette

Sounds very much like sciatica to me.

Sophiestree profile image
Sophiestree in reply to piglette

ah interesting. I always thought that went down your leg. This is very localised. I feel like I need to hold my right cheek when I walk! Like someone has pushed a broom handle up into my right buttock. Hopefully I can get past receptionists tomorrow. thank you for that.

piglette profile image
piglette in reply to Sophiestree

Sciatica passes from deep in the buttock and down the back of the thigh all the way to the heel and sole of the foot. It goes down your leg pretty well at the back. In my case it was mainly in my buttock and at the top of my thigh. It is agony!! Out of interest the sciatic nerve is the longest nerve in the body.

Sophiestree profile image
Sophiestree in reply to piglette

thank you, let's hope they can refer me quickly or i find the right person privately.

PMRpro profile image
PMRproAmbassador in reply to Sophiestree

A specialist sports physiotherapist might be really helpful - and they tend to hang around the neighbourhood of racing stables and cricket grounds ;)

Sophiestree profile image
Sophiestree in reply to PMRpro

Ha! will go and check the loitering....

PMRpro profile image
PMRproAmbassador in reply to Sophiestree

Ones in practices rather those loitering within tent ;)

Sophiestree profile image
Sophiestree in reply to PMRpro

😂😂😂

Sophiestree profile image
Sophiestree in reply to PMRpro

Sorry, me again. Just wanted to ask you about your flooding dose of Ibuprofen and how often you can do that,. I was in such a bad way today, the doctor has referred me to a physio, offered me amitriptyline, but then prescribed diazepam, which I haven't picked up as yet but decided to go down your route and took 800mg of ibuprofen. I often take 600mg anyway, or used to, so was happy with that as by then I couldn't put any weight on my right leg and was a mess. It most definitely helped. Hurrah. Took it with food and plenty of liquid but most definitely the first improvement since last Wed. So my question is, can I do the same tomorrow? Or is that too soon? Going to attempt to sleep now as it's kept me awake the past few nights. Thanks in advance!

PMRpro profile image
PMRproAmbassador in reply to Sophiestree

Ibuprofen was designed to be used like this, that was/is the professional instruction and the tablets are 400-800mg - all the relevant receptors are flooded with the painkiller and that works because it is total. It is said the company were furious when the regulators insisted that was too dangerous for we mere mortals when it was to be released OTC and 200mg was the designated dose. It rarely works because it wasn't designed to do so.I usually find that a single 800mg dose works to achieve pain relief - and for me more often than not that lasts 24 hours and a top-up of 200mg may well be enough to continue the effect. The instructions for max daily dose are 1200mg for OTC tablets, 3200mg for prescription tablets. Where is the logic in that?

fda.gov/media/112979/download

So even by OTC instructions you could take it daily - BUT if you need it for very long you should discuss it with the GP and ask for the larger dose tablets - mine always gave me the bright pink 400mg dose. Just looking at them you felt better ;) The point is that you start with this flooding dose - not a drop of water on a major conflagration ...

Sophiestree profile image
Sophiestree in reply to PMRpro

Yes. I have the pink ones. Always buy them. I'll see how I go today, can't say it worked for 24 hrs, but a huge improvement. I'm so bored with constantly thinking about my health!!!

Thanks for the help. I'd happily pay a monthly subscription to you for advice

😂😂😂

PMRpro profile image
PMRproAmbassador in reply to Sophiestree

Sometimes it doesn't - but then, I'm in there before it gets too bad. And after 800mg you still have 400mg to spare as a top up even at OTC recommendations. Can't understand why they are SO different though.

Sophiestree profile image
Sophiestree in reply to PMRpro

I am just going for it and make sure I eat before I take them. Not sure if it's referred pain, but now have issues with my shoulder and neck, or reduction of the pred and some of my symptoms are returning. I have had a few since reducing while administering the TCZ but nothing dreadful. Head tension being the worst.I am going to try and get a physio tomorrow or Friday, but they all seem quite busy! Ha!

PMRpro profile image
PMRproAmbassador in reply to Sophiestree

How much pred are you on? In the clinical trials, TCZ only worked 100% for half of patients. Which half are you in?

My back problems always get to include shoulders and neck if left ...

Sophiestree profile image
Sophiestree in reply to PMRpro

started 10mg for two weeks on Monday 8th, having been reducing since Jan from 40mg, 30mg when I started the TCZ then fortnightly 20, 15, 12.5 and after 10 she said to reduce by 1 each fortnight. I have had 7 TCZ so far. Yes, I know what you mean about back going to shoulder/neck. I have a bit of scoliosis in my neck anyway plus last report on pelvic area said dorsolumbar spondylosis noted, and bony lesion. Disc height reduction at the L4 and L5/S1 levels in keeping with the spondylosis. There is a scoliotic curve in the mid lumbar region convex to the left.

PMRpro profile image
PMRproAmbassador in reply to Sophiestree

Yes - I have a left-leaning scoliosis in the lumbar region - which is why it all keeps coming back ...Year ago, pre-children, I had a referral for back pain. The ancient orthopod, filling in for staff shortages, told me there was nothing at all wrong with my back and to go away and get on with it. The x-ray had been done lying - do they still do that in the UK? It is always standing here. So I put up with the pain for some years until I had a whiplash injury and a GP referred me to a superb guy. This was in Germany. Even I could see the scoliosis on the x-ray!! After a lot of muscle work the scoliosis was very much better but it always deteriorates eventually. Pilates helped a lot but no options here I could afford and manage.

Sophiestree profile image
Sophiestree in reply to PMRpro

Yes, lying down, bonkers really. Someone suggest I saw a musculoskeletal physio, but they are all private and expensive so not sure I can go down that route. If I thought a one off visit with exercises would be enough, then I might consider it, but it's something crazy like £170 a pop.... don't have that kind of money sadly. Scoliosis and crumbling bones, brilliant... bring it on.

PMRpro profile image
PMRproAmbassador in reply to Sophiestree

Huh - at least a private one might have some idea! I saw an NHS one in the early stages of PMR. Told me to bend over, could I touch my toes? I still could then, even almost get my hands flat on the floor (it was along time ago!). And informed there couldn't be anything the matter with my back as he couldn't do that! I pointed out men have tight hamstrings, should have asked it he'd heard of hypermobility

He was actually a physiotherapist who had done an extra course. Like the rheumy I'd seen who'd told me it was OA in my knee, she could feel it. And an x-ray 13 years later couldn't find any!

Sophiestree profile image
Sophiestree in reply to PMRpro

no wonder we have no trust in medics.... could write the book with you. I too have hypermobility, but I did see a physio once who got it and agreed it causes more problems, I can still touch my toes, just, but there's plenty I can't do, like pick up my grandchildren...

PMRpro profile image
PMRproAmbassador in reply to Sophiestree

Me neither - but they are 19, 21 and 21 ... And not months ;)

Sophiestree profile image
Sophiestree in reply to PMRpro

Hilarious... 😂

Constance13 profile image
Constance13 in reply to Sophiestree

Hyper mobility is a blessing in disguise! Handy for each of us but doctors/rheumies just don't get it. I have inflammatory arthritis which stops me walking (among other things) but I can "bend like Beckham" so no rheumy takes me seriously. However, my doctor understands so I am able to get the exercise/treatment as needed.

Sophiestree profile image
Sophiestree in reply to Constance13

Yes! You're so right. I'm glad at least your GP gets it, but shame on the rheumy ... infuriating for you.

herdysheep profile image
herdysheep

Sciatica was the first thing that came to mind. Your Pilates should help but it can take time. Talk about a pain the bum! Very painful indeed

Sophiestree profile image
Sophiestree in reply to herdysheep

haha, so true! along with everything else, this is definitely a pain in the bum!

Karenjaninaz profile image
Karenjaninaz

I had piriformis syndrome last year and was really helped by PT exercises. For awhile I used a sitting rollator but made the mistake of using methyl salicylate patches too long; the compound was absorbed through my skin and I was exhaling the smell! I went to hospital for shortness of breath. In the medical literature I found references to this problem.I suggest a safer remedy would be the diclofenac gel to the painful spot as directed. My husband got decent relief before his knee replacement. In the US and I think in Poland and Germany you can buy it at the pharmacy.

Sophiestree profile image
Sophiestree in reply to Karenjaninaz

Wow! You couldn't have predicted that could you! I'm using Voltarol gel, not sure if that's the same thing. Not done much so far, but I know i need to get exercises sorted. Going to Google a sitting rollator.

mgrogers99 profile image
mgrogers99 in reply to Sophiestree

It is the same thing. I find it very effective for a bad knee.

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