How do people deal with really painful hips

As5567

I have always had pain in my hips and it has never really bothered me that much in the passed as it was just a nagging type of pain that was just constantly there and never got any worse/better during flares.

Things seemed to have got a lot worse over the last few days and my one hip has become extremely painful to the point that I'm unable to even walk or do the most simplest of tasks like getting my leg into a car.... The main problem seems to be that any wrong movement I make it causes a huge amount of pain that feel like its really deep inside the groins area of the hip, the last few nights I have been awoken by what I can only describe as the worst pain I have ever experienced from this horrible disease in my life, my hip appears to "lock" into place and this causes a huge amount of pain if I try to move in my sleep. The only thing I have found to fix this is by slowly forcing my hip upright and laying on my back, which again is painful in its self. it almost feels like there's something inside my hip stopping movement and its really beginning to frustrate me.

One of the problems at the moment is that I'm not currently on any medication and won't be for at least the next 8-12 weeks because of a "backlog" and "supply issues" with medications at the biological clinic. The doctor I saw yesterday told me there isn't much else he can do for me in the meanwhile other than to give me oral steroids, which I have accepted and started to take. But I know they won't do much good, they never do for me. What I need is IV steroids but there isn't any way they can fit me in for at least 5 weeks so that's not really an option at this time.

I'm also trying to revise for my upcoming exams in May, its my final year and I really don't want to defer my exams and risk not being accepted to do my Masters next year, so the added stress of this also isn't really helping the situation.

Thats life with Arthritis tho I guess, you can never predict when it's going to come and mess things up, and for how long!

dreamdaisy

I think a trip to your GP is in order - could this be the beginnings of OA? I dreaded my hips being affected and, thanks to my OA, the right one is and the left is beginning to join the party. It's not fun. I sleep on my side with a pillow between my knees and ankles to keep my upper hip in a straighter position, that helps. I no longer move naturally in my sleep, I have to wake up to turn over. :roll: Needless to say it's pain that wakes me. DD

bubbadog

I know how you feel with painful hips! My pain is like a constant burning pain in my hips and if I lie on them or put weight on them the pain gets even worse. I was told I had fluid on my hips. I never seem to get a full nights sleep as I'm waking up when the pain gets to much on one hip so I have to change sides and this goes on all night! I agree with DD I think you really need to go and see your G.P. Hope you get some relief from the pain soon.

Boomer13

My sympathy to you. I get flares of PsA in my hips and it is horrendous, especially at night. It's the only time I take morphine.

barbara12

Hello As5567
Have you had xrays done the hips or scans, there is something going on and you need to know what...I have OA in my hips and the pain in your groin and deep in the hip describes this...there are a few things that can be done about it.. an arthroscope with a camera to see what is going on, they can also inject steroid in at the same time..so go and see your GP...please let us know how you get on.

19smp59

I was going to ask if you had had an x-ray of your hips, in any case it sounds like you definitely need to see your GP. I have OA in both hips and it is sleeping that causes me the most problems. The advice is don't lie on the hip with arthritis in, but as it's in both this is difficult!

As5567

dreamdaisy wrote:

I think a trip to your GP is in order - could this be the beginnings of OA? I dreaded my hips being affected and, thanks to my OA, the right one is and the left is beginning to join the party. It's not fun. I sleep on my side with a pillow between my knees and ankles to keep my upper hip in a straighter position, that helps. I no longer move naturally in my sleep, I have to wake up to turn over. :roll: Needless to say it's pain that wakes me. DD

I don't think its OA in the hips yet, but then again I'm not very aware of how OA differs from AS Arthritis so its hard for me to tell really. One thing that I do know is that my Anti Inflammatory tablets do work very well and make most of the pain disappear for an hour or so and then the pain builds up (Almost as if fluid is building up inside the joint) to the point where any movement of the hip causes a lot of pain

barbara12 wrote:

Hello As5567
Have you had xrays done the hips or scans, there is something going on and you need to know what...I have OA in my hips and the pain in your groin and deep in the hip describes this...there are a few things that can be done about it.. an arthroscope with a camera to see what is going on, they can also inject steroid in at the same time..so go and see your GP...please let us know how you get on.

I last had an xray on my other hip (Which has also decided to play up today :@ ) This was done in Nov last year at my old hospital. I was actually scheduled to have an ultrasound done on my hip but got moved to another hospital before that was possible. My doctor said that the xray shown a bit more deterioration than he would expect and wanted the ultrasound done to give a clearer picture. He did say at the time that the cause of the deterioration is inflammatory in nature but that doesn't rule out the possibility of a new type of Arthritis adding to the cause. I have always had problems with my hips on and off but never this bad, something is different this time I can tell

19smp59 wrote:

I was going to ask if you had had an x-ray of your hips, in any case it sounds like you definitely need to see your GP. I have OA in both hips and it is sleeping that causes me the most problems. The advice is don't lie on the hip with arthritis in, but as it's in both this is difficult!

I will make an appointment to see my GP but this will probably take 6 weeks and I will be told to talk to my Rheumatologist and then he will proceed to try and take away my Arcoxia and replace it with Naproxen (It's a money thing, they always try to take it off me!) I have a new Rheumatolgist now who might not be so willing to write to my GP telling them that I must continue to take Arcoxia and that no alternative drug should be offered unless I agree to it.

Sleeping is a very tricky thing for me right now, I can't sleep on my back because of my AS, sleeping on my back causes my ribs and chest area to go into spasm making it so hard to breath at times that I'm left gasping for air, and sleeping on my sides my hip seems to lock into a position and doesn't want to budge.


Thanks all for the advice and support you have given, I'm meant to be seeing a Rheumatology nurse today for some tests to measures the flex in my spine and chest expansion for AS. I spoke to her on the phone yesterday saying I wanted to cancel because things were so bad and I virtually cant walk at the moment, not even with crutches because of my back and shoulders. She called me back to say she had spoken to a doctor at that hospital and they will asses me tomorrow for the tests as normal and possibly admit me to hospital for 3 days so I can have IV steroids that way over the course of 3 days.

She also said that she's the nurse in charge of the Biological treatments and that they will just have to fit me in and see me when they can, hopefully by the end of April she said, so that is a bit more good news. I'm not a big fan of having steroids because of the after effects like weight gain, round face, excessive sweating and so on but I guess when things get so bad that I have almost no quality of life its the right decision.

I will be taking my laptop and phone with me so I can revise and keep up to date with what's going on in the world, I will update this post to let everyone know how things are going (Hopefully this time tomorrow I will be on the steroid "high" where everything in life seems great and I feel like superman, except I know I will need to rest and will make sure I do)

Fionabee

I'm sorry u r feeling so rough, I really do empathise.
I don't know all your history, but you say, no medication at moment and 6 weeks to get a GP appt & you need IV steroids, why?
It does sound like OA, just as my Mum described it & she has now had a replacement. Fortunately my hips are still ok.
How on earth can you revise when you are in such pain.
Wont some NSAIds and painkillers help or is there more to this than that?
Apologies if I have missed something.
Fionax

Fionabee

Sorry, reading things on a phone is easy to miss bits.
Is AS anky spondylitis? I dont know anything about it.
Does it rule out more traditional pain relief or have you already been down that route?
Fionabx

dreamdaisy

Ankylosing spondylitis is an auto-immune variety of arthritis hence the need for the steroids etc. Pain relief is pain relief, there are variations on the given theme but they all do the same thing - not a lot.

I know from experience, As5567, that my OA pain is very different in nature to the PsA pain. The OA is sharper, hotter, more targeted whereas the PsA one is more generalised and makes me feel fluey as well as achy. Neither is fun. DD

Boomer13

Sorry to hear you are having such a rough time. Hopefully the steroids will give some relief.

I don't like going the steroids route either but sometimes it becomes the lesser of multiple, painful evils. I recently told my rheum that I never wanted to have steroids again only to find myself back on them six weeks later :roll: . I was glad to have them. Hip pain is so hard to deal with because it's so incapacitating; my flare-ups seem to take forever to settle down.

Best wishes.

As5567

Well today has been an experience in its self, I have been poked and prodded and passed around to see all sorts of people. It has been a very busy and exhausting day. I have had blood tests, x rays, steroid injection into the worst hip, full body examination of my joints and a urine test.

I'm due to start the Steroid's in the next hour or so, there was a delay in starting treatment because of a backlog at the blood lab. I'm currently sat in my own room watching some TV and browsing the internet on my laptop, I have been given some IV pain medication so I'm not really in much discomfort at the moment. Hopefully I will wake up tomorrow starting to feel the benefits of these steroids

barbara12

Oh you must be shattered..I hope they let you go soon then you can put your feet up...fingers crossed the steroids works for you

As5567

I hate to say it but I'm now 10x worse than I was before the steroids I actually passed out this morning trying to reach the toilet, the pain and muscle spasms are becoming unbearable now and I can't take no more. This is by far the worst pain I have experienced in my entire life and every day it seems to be getting worse and worse, my gp came to the house and really wanted to prescribe a short dose of strong pain killers and also some strong muscle relaxing drugs as a very temporary measure in hope that the steroids will work but he is unable to do so without consulting with the rheum department at my new hospital first. They only take phone calls twice per week, you cant even leave a message out of hours which I think is really stupid.

I'm a bit concerned that maybe something else is going on in the background, I have had arthritis for over 10 years and the pain has never been this extreme ever, almost every part of my body hurts, my temperature has been 38-39 for the last week and I have lost almost 2 stone in around 12 days, yet every doctor I saw in hospital just told me this is all normal and its just a very bad flare up

I have around 10 days until I need to make a decision on what to do with my exams.....it looks like I'm going to have to either settle for predicted grades or sit them in August, neither will be favourable, there is a slight possibility I can sit them in my home but I'm awaiting to see if the exam board are happy for me to do so.

bubbadog

I'm so sorry your having such an awful time of it at the moment, having to deal with exams as well. All I can say is try and rest as much as you can, sleep helps your body to repair it's self, as for the exams you want to get a good grade so my advice is sit them in August and up to then try and get seen by your G.P or preferably your consultant. If it is a bad flare all you can do is ride it out by plenty of rest that's all you can do.

tkachev

From my own experience It sounds like bone against bone and you may well need a THR in the near future. Movement is painful but it also locks up and is agony to release it and no pain killers touched it. I'd ask for a x-ray.


Elizabeth

As5567

Well my hips are feeling slightly better I think but the muscle spasms are even worse and are now happening in my legs, back and chest. I have found sleeping the last few days near impossible and the only way I can get some form of sleep for around 15-20 minutes at a time is by sleeping sitting up and bent over a pillow.

tkachev wrote:

From my own experience It sounds like bone against bone and you may well need a THR in the near future. Movement is painful but it also locks up and is agony to release it and no pain killers touched it. I'd ask for a x-ray.


Elizabeth

I doubt I'd be able to even lay in the correct position for any type of X ray at the moment, I find hip xrays very painful when they ask you to point both feet together and hold them there for what seems to fee like a hours!

bubbadog wrote:

I'm so sorry your having such an awful time of it at the moment, having to deal with exams as well. All I can say is try and rest as much as you can, sleep helps your body to repair it's self, as for the exams you want to get a good grade so my advice is sit them in August and up to then try and get seen by your G.P or preferably your consultant. If it is a bad flare all you can do is ride it out by plenty of rest that's all you can do.

If I could just get to the exam room I'd happily sit them in May, but thats simply not possible right now. I think its probably sensible for me to prepare the bundles of paper work I will need to apply for extenuating circumstances