LUPUS UK

Very deflated ☹️☹️☹️

Well i went to get injection in sacroiliac and was told it wasn't happening , it need x-ray guidance and they couldn't do that at clinic -- so why was i sent there ???? From previous x-ray she thinks i may have a disc problem as well as bad wear of vertebrae. The pain is in the sacroiliac and is the same pain i had when had previous injection. I am feeling let down and deflated , doc referred me for mri and physio which could take nine months 😖😣☹️. Im in catch 22 situation i try to do exercises but end up in severe pain but i need to exercise to improve. I think i will have to go back to gp and discuss pain relief , did talk to the doctor at clinic but not impressed with her suggestions think i also felt let down so may not the right time to discuss it . I am not going to let it get me down too much as just have to keep going and live life . Thats my moan over , happy face now firmly reapplied 😬😬 onwards and upwards 👍👍

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Oh my goodness! I am feeling very let down for you. This has been dragging on hasn't it. Why on earth did they make an appointment there for you today, if they couldn't do an x-ray guided injection?! You poor thing. You are right though, see your GP and discuss pain relief and a realistic way forward. I get your catch 22, exercise causes me pain in my hips and back but I know I need to exercise for all of my other issues. Keep smiling and that positive attitude will keep you going, after your much justified moan. Big hug. x PS That's a very long wait for an MRI and physio. x

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Thanks wendy, all a bit of a mess ! It is a long wait but may so privately, another thing to discuss with gp , i may make a treble appointment 😀

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Ha ha, I've only ever been offered a double appt once, when the GP got the letter to say I'd been wrongly diagnosed for 3.5 years and had a new 5 point treatment plan. Otherwise it's strictly the 5/10 mins, or the get you out as quick as. Oh well, we all know what the system is like and it's not suited to us poor lupies. I hope you are able to enjoy the weekend. x

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Ach you poor love. I'm "home" on my island for a week of DIY, seeing friends and gardening - and have established severe wear and tear in my lumbar discs 4 and 5 and manageable arthritis in my hips and both knees. I take a "move it or lose it" approach to myself. But currently it means my left thigh, groin (right up into privates!) and under my backside are all playing up - hobbling slowly until I limber up over the day. I feel like a doll with a disjointed leg that needs slotting back in.

Hubby says my approach is clearly adding to the wear and tear somewhere and carrying round a big leather satchel full of all my Sjögren's nonsense is not helping much! But I'm determined not to give in so I plod up and down the steep hill and force my ungainly limp into submission in case my old GP sees me as he drives past!

It's hard going sometimes but I haven't got this pain constantly as you have and tend to forget about it when it eases up. Hope you can get some proper help soon. Xx

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Your description of your hip pain, OA, is just like mine! I helped at the school summer fete on Tuesday and was on my feet too long for me. I have suffered with that sore tender buttocks, pains down my legs etc ever since. Grrr. But you are right, ultimately, use or or lose it. Enjoy your week on your island, sounds lovely, apart from the pain. x

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Thanks Wendy home on the boat tomorrow with six hour drive the other end! Should be fine but coming up it was 2 hours late arriving so we just had to sit in car queue and then they had to sail the long way because of tide and huge swell and we didn't get here until 11.20 - was meant to be arriving at 8.45! X

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There was a discussion here about hip pain earlier this year I recall. I said that my first rheumy actually patted his groin on a VC link to show me where hip arthritis presents! Others then commented that groin wasn't hip as I used to think.

So I asked a friend of mine who is about to have her second hip replacement - if it affected her groin first and foremost and she said this is most certainly where arthritis of the hip is felt. It was good to have clarity because, tbh, otherwise I'd have thought I had something nasty in the gynae department going on!! X

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My late mum had both hips replaced and that was where she felt the pain as well - she also was born with congenital dislocation of hips which makes it more likely that hip replacement would be necessary

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I've never heard of congenital dislocation of hips. I need to look that up.

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You are born with it and now days (well 20 years ago when my boys were born )the baby's put into a frog leg plaster cast. My brother in law had same problem and had a hip replacement at 55 .

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Interesting. I googled it too. I've had a hip arthroscopy already, aged 38, to try to prolong my own hip life. But I've been told I'll need hip replacements both sides, before my time. I'm 42 now and my left hip is bad. Trying to delay any further ops or replacements as long as possible. The surgeon who did my hip op asked me if I'd ever been told I had clicky hips or was it detected at birth? Answer to both no. X

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Clicky hips is another term use for congenital dislocation ! My middle son had scans as a baby as doctor thought he had this as well . They should be able to determine if you were born with it from x-rays or scans . I hope you can avoid ops for as long as possible, though living with pain is draining, best wishes xx

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I have smiley face plastered on 😬, thanks for your thoughts . About your satchel a cross body bag or a back pack might be helpful as less onesided . Have a lovely weekend xxx

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It is cross body W - my school girl with too much homework look!! X

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Pig tails to match ??

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Oh yes that's me ha ha (not!) x

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Undiagnosed clicky hips at birth? My friend had both hips replaces at 30 and a large amount of compensation through failure to check as routine. That's practically the earliest thing the should check for. An rxtra tight old fashioned nappy from early days or the frogs leg cast should have happened.

As to OA + inflamation, yes, it's the groin first.

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My mum would have been 93 if she was still alive and was born in rural Fermanagh, I doubt a doctor was ever involved . She never complained about pain but you knew it was severe. There was no one to blame , now days these things should be picked up immediately at birth .

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Mine was maybe triggered by bearing 3 extremely long baby sons I think. My mum didn't have hip or lumbar arthritis and nor did my dad. But my hips are narrow and I'm short and apple shaped so not a great combo!

Then again I was diagnosed with inflammatory arthritis and always have plenty of systemic inflammation so perhaps it's autoimmune related rather than straight OA.

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Interestingly when researching a possible link between my hip OA and lupus - which I think also causes some of my hip pain and has blurred the two issues - I have found a few articles where doctors are thinking that in fact OA does have an element of inflammation too, not just RA. I asked my hip arthroscopy surgeon about a link and his reply was something like, "well the lupus certainly won't help the OA". x

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Lol the surgeon really committed himself there!! If you have general inflammation it is bound to have a knock on effect on other bits and parts of body as you walk differently and protect the bits that are sore .

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Yes but I think that there might be inflammation in the joints themselves, even with OA which is historically thought to be purely wear & tear. That way of thinking is changing.

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Hi weathervane

So sorry you didn't get your injection, sounds like your pain clinic isn't we'll run. The doctor is right though to find out fully what is causing your pain. All injections are risky and only done now if chance of success high due to budget restraints!. No fun when your in pain. Good idea to see your GP about pain killers and I hope it's not as long a wait for your MRI and physio!. Good luck and keep us posted. X

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Thanks misty , i will just have to find a way to manage it , one of the problems is pain centred in one site usually causes problems somewhere else as you protect the sore bit -- my knee on other side giving me jip !

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My sister has this and she's allergic to most pain killers so can have panadol -dont bother.

So she has to do palates, sees a chiropractor, sees a medical massage,lost 3.5 stone, walks and does aquasize. She also can't have operations as kidney disease prevents her from having anesthetic? But if she doesn't do it she turns to stone.

So yes I'm sorry catch 22. But at least your in the system. I've been waiting nearly 3 years for hydrotherapy at the Nuffeild Orthopedic hospital oxford. So hang in there!

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I know there is no point in feeling sorry form myself . I am trying to lose weight at moment which is not easy , and walking as muchas im fit for. It a pity it feels like a uphill battle. 3 years is a shocking wait for anything, have they lost the referral??? So much can change in that lengh of time

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So sorry your going through this. Very disheartening. Advocate for yourself & do what you can. Can you get on any cancelation list for MRI & physi. Hopefully another visit with doctor will help to find more options. Thinking of you.

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Hi , speaking to gp tomorrow and weigh up the options. Im not going to sit back and fester , i need to get the pain under control and keep active. Thanks so much for your support, i hope you are keeping well yourself xx

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Been to gp and he has been cautious about pain relief to try paracetamol 4 times a day with small number of low dose tramadol incase no success. If no relief butrans patch is next option. Pain has settled a bit at moment but does come backif i make the wrong move ☹️

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How do you feel about that? I had tramadol after my hip operation but didn't like how it made me feel. Have you had it before? X

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Ive had a high dose after shoulder op and it made me feel a bit floaty . Haven't tried it yet , i will leave it for now unless pain increases again . Gp cautious in their procedures for dealing with pain . He thought the lyrica i take should have had an impact but it obviously didn't!!. Hopefully getting MRI done privately so will get more of idea how bad things are . How are you keeping today yourself??

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