Funny hips - anyone get this??

suzygirl

Hi am suffering with a flare at the moment, really struggling with fatigue, pain, weakness and stiffness.

My ankles ache, achilles tendonitis back with a vengeance. Any tips for this appreciated. I keep stretching then, but can't seem to get any relief.

My question is re my hips though, they are stiff and inflamed. When I lay my legs out my one leg drops to the side. So one foot pointing to ceiling and the other foot to the side. (If you understand ) Just wondered why this would be and if anyone else has this. This particular leg is extrmely weak and very painful.

Hate to moan, but this stupid disease is sooo frustrating, I want my life back. :sad:

barbara12

Hi suzygirl
I really do feel for you, I have OA in my back and hips, I have to put my hips in all soughts of positions to ease the pain.
I do use a lot of heat cushions, and hot water bottles.
Sorry I am not being much help, but please dont apologise for moaning, we are all here to help one another, and it does help to talk about these things.
Sending you lots of gentle hugs (((((())))
Love
Barbara x

dreamdaisy

When one lies on ones back with your legs out in front of you, relaxed, your feet naturally drop to the side, like the first ballet position, they don't naturally point up to the ceiling. Is that what you are referring to? Mine don't any more, not because of hip trouble but because my legs don't lie flat. DD

bubbadog

Hi Suzgirl, I am just getting over a 'flare up!' and both my hips where sore and inflamed. You couldn't even touch them they hurt so much, and when I lay down one leg pointed up & the other to my side. I didn't know why it does it. It still does it now!! Weird it's good to know I'm not just the only one! I put it down to me being weird!! Don't worry your not just the only one!!

frogmorton

Hi Suzy

Poor you :sad: you sound to be suffering a lot at the mo....

I think you need to make a note of your hipstuff and the way your feet fall for the doc next time you see him...not sure why it's happening at all. Mine both fall forwardish and almost upish too.

I hope things settle for you soon.

Love

Toni xx

suzygirl

Thanks all for your replies, it does help. I have a gp appt tomorrow to talk over things.

Daisy, thanks for your description, it made me realise it must be the leg with the foot pointing up that is too stiff to move.

Barbara, how are you doing?? Have you got things sorted as to what is causing what now?? Hope you are having some relief from the pain.

Bubbadog, I am relieved to hear I am not the only one with this problem. What type of arfur ails you??

Frogmorton, hope you are ok.

I popped out today quickly to a shop, all I could manage. I parked outside the shop as was only space available. Used my badge as it was a disabled shop. Some woman said loudly " look at her parking in a disabled spot, she doesn't even feel guilty". It made me so mad, I am really really struggling at the mo and only use my badge when I really need it, like today. People are so ignorant.

dreamdaisy

I never have a problem with comments as the crutches tend to give the game away! I do get the odd funny look from people as I swing into a disabled spot but as soon as they spot the glint of sunlight on aluminium they look away, sharpish. DD

suzygirl

Daisy, my hands are sooo painful at the moment that using the crutches is agony, so I left them in the car. I was only in the shop a few minutes, all I can manage at the moment. At the till, I was holding on to the counter, praying I wouldn't pass out, as I felt so ill.

Hope you are having a good day. I find the crutches so tiring, its almost not worth it. Find staying at home an easier option these days!! :sad:

skezier

Hi Suzy,

Snap! I have one that stays up and one that falls out..... before I had the arthritis both stayed upright cus that's the way my legs were. i was slightly pigeon toed as well... still am but not as much with the new gorilla walk.....

My turn out one can't rotate inwards and the other cant out wards and mine is arthritis in the hips but fortunately they don't hurt too much so i am just very lucky.

Can you get ot to make the crutches more comfy for you flower? its not good to be unable to get out. Hope you find it all eases up for you soon. Cris x

frogmorton

Hi Suzy

l'm well thanks hope you are doing a bit better?

that woman!! Think karma and ries above it...what goes around come around....you were NOT wrong to use the badge.

Agree with Cris maybe you need soemthing else for your mobility of teh critches cause MORE pain :sad:

Take care

Love

Toni xx

suzygirl

Thanks Cris and Toni, I had a gp appt yesterday. She thinks the inflammation is attacking the muscles as well as the joints. (This has been mentioned before, don't know why I keep forgetting!!) She is going to refer me back to OT and physio for exercises and more help re mobility.

She is also going to speak to my rheumy nurse about getting splints ordered and possible hydrotherapy. It was a good appt, so I am pleased. Still flaring though and in pain, just grinning and bearing it, as you do!!

At least I know now why the muscle weakness, tremors and spasms are just getting worse and worse. Sometimes, it is hard not to think you are just lazy, then you get up and your body won't work. Sure takes a lot out of you dealing with this!!

dreamdaisy

Let's hope the splints do something to help - what sort of handles do your crutches have? I used to have fat, padded ones but I cannot use them now. I have some ergonomic ones, one set is more flared in the palm part than the other and they aren't too bad. It's a skill, using these things, it's a matter of balance and stability but they still have to be held, which I know isn't easy at times. Oh the frustrations of this blasted malarkey - it's enough to make a saint swear and I ain't no saint. I hope the new scheme of things makes a difference, hydro could be helpful and OTs can come up with some good ideas, what has your doc suggested meds wise? Anything different? DD

suzygirl

Thanks Daisy. Doc is going to speak to rheumy nurse about the situation. No meds change mentioned yet, I just hope they don't increase the pred, I have managed to get down to 7.5mg, although I feel dreadful. I just want off them so badly. They don't warn you enough of the side effects in my opinion, I have weight gain, diabetes and high bp and fatty liver to contend with as well now. As if arfur wasn't enough!! lol

I am a bit nervous about the hydrotherapy to be honest. Thats if it ever happens! I am a lot more sceptical these days! My body 'doesn't work' in the water, my muscles are too weak. I have been told not to go swimming. Have you any experience with it?

I am more hopeful with the OT though, they recommended a wheelie thing before, and I rejected it. I wish I hadn't as I have no mobility, I am too unstable on crutches. I will ask about the handles if I go. I have a contracture as well, so my palm is extra painful. I am sure you know how complicated these things are, its never simple!!

Thanks again Daisy, you are a gem. You seem to be suffering a lot yourself these days. I have to use the sunsense factor 50 suncream, it is available on prescription, it doesn't make you look all white!! Thinking of you x

dreamdaisy

Hydrotherapy was a disaster for me, it was fine when in the pool but after, when gravity hit as I got out the benefit was immediately wiped out by increased fluid going into the joint and then enforced immobility on the sofa for about 24 hours after waiting for it all to deflate. I now know that lolling about was not the best thing to do, but this was the early days before diagnosis, I was only taking sulph, and this was during my recovery from the first synovectomy when I was all at sea anyway.

Hydro could be helpful and you won't know until you try. Don't overdo things in the pool, literally do about five minutes at first and then get out. Never mind what the instructor says, you have to take things so slowly at first so that you can find out what you can tolerate. It makes sense to exercise the poorly joints whilst being supported by water but the after-effects can be nasty and debilitating. Be cautious is my advice but yes, be willing to give it a whirl if the chance comes up. As regards swimming I don't. The payback is too much. It's nice when I am in but the trouble after? No thanks, soooooo not needed!

I empathise on the steroid front, I am down to 10 at the moment which is 10mgs too few. I will not, WILL NOT put them back up, no matter what this blasted pestilence flings at me. I want off, as do you, their complications are not worth the benefits. Well. that's what I keep telling myself, knowing all the while it's a big fat lie. I have hefted on about five extra stone and galumph around with all the grace of a lead-inflated hippo. Doesn't help the morale, does it?

I can also empathise on the wheelie thing, the indignity, the shame, the hopelessness of realising that it has come to this. On the other hand if it means that you can get around a little more easily . . . . . but yes, it is galling. Taking the next step of getting a frame, or a wheelchair, or a scooter is not easy. You know it is sensible but . . . . . . the heart and mind cries out against it, the unfairness is so, so bitter. The fact that others use these things is immaterial. It's you. It hurts.

I have had a scary couple of days, I don't mind admitting. My temperature yesterday hit 101.5 - as I usually run at about 96 that was odd. What was odder was the fact that I felt absolutely nothing, I felt fine. Yup, immuno-suppressants aren't that helpful on some fronts, are they? I told myself that if it hit 102 then I would waddle up to A&E. It didn't, so neither did I. It's now 98, it's going in the right direction but if it surges again then I will. I am not a complete idiot - some parts are missing!

It will all get sorted, one way or another. It will pass, all things do. Just hang on in there suzygirl, we're here to support you all the way. I wish you well. DD

suzygirl

Thanks Daisy, you really hit the nail on the head. You have such a great way of describing things.

I too had to discontinue swimming, I would be too ill to get changed and get home afterwards. Then I would be totally wiped out for days. I have been advised just gentle walking, I have a heart problem as well thanks to this delightful disease. It seems no part of my body wants to get left out.!!

I do have a wheelchair, but that means someone has to push me and I don't have that luxury unless hubby is around. Plus to be honest being in the wheelchair does not bring out my best side!! Frustration and patience are not my finer points.

If I get the chance I will take opportunities offered. When I first became ill I was still under the illusion that I would 'get better', and was a teeny bit stubborn. :roll:

Thanks for the support Daisy it is much appreciated. I do hope your temp doesn't rise like that again. You must get it checked just in case, these meds do lull us into a false sense of security. Let me know how you are x

dreamdaisy

To be honest I have felt ever-so-slightly neurotic about this issue - I have checked my temp about every six hours for a while now, and whilst it is reducing I do wonder just what is going on. I know the theory about having a high temp and not feeling a thing, that was one of the sternest warnings I had when I began the humira, but the reality is very disconcerting. I suspect that is why I set myself the - on reflection - rather stupid target of 102 degrees. It's now 97. Do I go 'woo-hoo!' or do I keep on measuring? I have no idea, so to be on the safe side I will do the latter and hope to get back to my usual 96. That would be good. I think. I'm not sure.

None of this is easy, is it? I am tired beyond reason with it all. I'm off for the 1st AGM of the FATBROAD club. Come with? DD

PS If you missed the 'clubs on AC' thread FATBROAD = Frustrated And Tired Beyond Reason, Oh And Distressed.

suzygirl

Daisy, I am not on your meds, but over the last year have had a few serious infections requiring hospital admission that started with nothing more than a high temp. If I don't feel quite right I do check my temp. You are right to monitor things, you sounds asif you know yourself something isn't right.

I don't know if like me, you get fed up of all the rigmarole it all entails though. Keep an eye on things and maybe check in with your gp in the morning. Have you done a dipstick of your urine?? First thing I check for is a UTI, the side effects are hideous, I find.

Take care and keep hydrated.

P,s I accept the invite to the club, I more than qulaify lol

dreamdaisy

Fed up with the rigmarole? Oh yes indeedy. It has been an odd couple of days, knowing that the temp is high but feeling perfectly OK (in fact better than usual) is very strange. High temp should mean shivering, wrapping up in blankets, cuddling hotties but still feeling cold, yes? Not for me, I didn't feel a thing, neither hot or cold (tho the pred melts still swamped me from time to time just to add to the entertainment!) It's 97 this morning, so I am nearly back to my usual. I hated checking it so often (talk about hypochondria) but I am glad I did and I am also glad I didn't go trolling off at the first hint of trouble and waste lots of people's time. I haven't checked my urine, there's no trouble at that particular mill, as far as I can tell - mind you, being on humira, perhaps I should. I'll have a think about that one!

It is a difficult tightrope we wobble along, yes? I hope things are as well as they can be for you today. DD

suzygirl

Just checked in this morning to check that things are ok with you. Glad to hear that they are not any worse.

Glorious day here!!! Had a restless night thanks to my shoulder, but the sunshine and blue skies seem to lift things slightly.

Have a good day