Painful hips - what should I do?

[cat117]

Not sure if this is the right place to put this but here goes:

I have really painful hips anyway but if I lie on my side (say in the foetal position) it feels as if the weight of my leg is pulling on the hip which is on top and it's really painful. I've tried propping the leg up with pillows etc but it doesn't seem to help. The problem is I naturally sleep on my side so even if I manage to fall asleep on my front I still curl up in my sleep and wake up in pain. Some nights I find it impossible to find a position that is comfortable for all of my joints and the pain keeps me awake, helpful with the fatigue I suffer from anyway.

I take co-codamol (prescription strength) which only lasts for 4hrs, and the last time they gave me 12hr painkillers I was so out of it I asked my partner to stop sparkling because it was distracting, I can't take pills that will work until I wake up.

Any ideas how I can wake up NOT in pain?

Oh and I'm -terrified- of becoming addicted to coedine so I can't take it at the same time every day (ie. before bed) so any advice on finding a position which minimises the pain to a level where I can actually sleep?

apologies for the sob story

[Englishgremlin1]

Sorry to hear of your problem. I have had a lot of hit problems in the past and I'm going through them again now. Afraid I can't offer you some magic that will deal with it perfectly but I have found two things that actually help a little bit.

One is to sleep with the bottom of the mattress slightly raised. I don't know why but it seems to ease the pressure on the hips.

I have a feeling that it is because I move around a lot in my sleep that is causing some of the problems and the only thing I have found to help with this is to use loads of pillows around the bed to reduce the amount of movement.

Hope some of this helps, and if you find any more good ideas please share them with me, as I too am searching for better ways of coping.

[everhopeful]

I go to sleep with not much of a problem with my hips, but because I move around in my sleep, I wake up in agony as my hip clunks out of place! I then have a fight on my hands to wrestle (if you can call it that) with my pj's fabric to try and rotate my leg back round to get my hip back in place. It's agony and disturbes my sleep so often. Was prescribed Amitriptyline but can't take it constantly otherwise my metabolism stops.....I use it when I'm desperate and know that I don't need to be too alert the next morning. It does help when I use it. I really wish I could use it all the time but the Dr agrees that ad hoc is better than not at all or constant use leading to big appetite, no metabolism and the weight gain associated with this! Don't think that was neccesarily advice, but it may help someone! Liz

[lil_miffy]

Im in agony at the moment with my hips and 'agony' is a word i never use to describe my pain.

Iv talked about my hip problems on another thread so won't go into too much detail here but it looks like i have dysplasia after a bad dislocation triggered off a really bad pain flare in the whole pelvic bone area and my hips just keep subluxing all the time. I had an xray that showed 'structural issues' all my phsyio would say. Im waiting to see another physio who will then refer me to an orthopeadic surgean to decide what to do.

this past 2 weeks Iv been so bad with the pain. It feels like my hips and lumber are on fire. If i drew a basic outline of a woman the line of the side of the hips is where the pain is all the time, the actual bone. however when the hips are subluxing its the hall and socket of the joint that hurts. The other pain i get feels like the shooting tooth pain when you need a filling or you have really bad tooch ache and you get shooting pains through the tooth. It feels like that in the actual one around the socket, the actual bone itself hurts (if bone can hurt).

Im also getting horrendous pain in the thin bones between the groin and the thigh and the point front parts of the hips bones and the top of the front of the thighs.

I can put my TENS machine on my back to help with the SI joint pain which is also the worst its ever been (probably due to all the rest of the pelvic pain), and the bck hip pain and side hip pain but i cant do anything with the front or groin area.
I can't leave myTENS o in bed in case I fall asleep but im not sleepign anyway im in too much pain.
Im sleeping with a pillow between my legs and under my knees which helps my hips stay in places.

my pain meds just arent touching the pain and its getting worse. I dont know what else I can do. I see my physio on wednesday but I dont know what he can do pain wise.
I can ask my gp for stronger pain meds but im on tramadol and topirimate and amytriptaline i dont think he can give me anything else or will understand the level of pain im in. (he freely admits he has no idea what eds/hms is or how it works but is really good with me at trying to help). Im hoping he will refer me to pain clinic but its a long process so that doesnt offer anything immediate.

This is the worst pain Iv been in with my eds, or anything to be honest. I normally can block out pain eonough to function more or less normally to other people but at th moment i just appear spaced out its taking that much concentration just to not cry.

[Englishgremlin1]

Sorry to hear this Ill Miffy. It sounds like you need some major help. Mine is still bad and waiting to hear from my physio but I wonder if you need A & E.

[everhopeful]

This sounds horrendous, lil-miffy. I would imagine that you cannot function at all at the moment. Do you have someone to help you with the basics at home? I really hope that you manage to get some help with this very quickly. I can't trust my hips as they lock when I am trying to walk (with no warning) and it can be very painful when they get into the wrong position in my sleep and I have to try and rotate them back, but that is nothing compared to what you are going through. You need to ask your physio what was meant by "Structural Issues" so that you can reasonably understand what is happening to the structure of your hips and pelvic area. I really hope you get relief soon. Take care ,Hun, gentle hugs. Liz xxx

[Fiona-Jane]

hiya,

i really hope you get some help with the pain etc soon, it sounds absolutely awful!

maybe your doctor can give you some stronger pain meds to use, maybe just at night to help you get some sleep? i was told i could use my tens machine all night if i needed to, so i bought some of the bigger electrodes of ebay (the really long rectangular ones) and leave them on my hips and si all night so i sleep better, i have a tens with 2 channels so can plug in 2 sets of pads.... i dont know how i coped with the little lloyds pharmacy one channel tens machine!

i dont know what to suggest, i have hip dysplasia too and get similar pains in my hip sockets when they are really slidy but i very much doubt they're as bad as yours so my little tricks to settle hips probably wont work. i find the tens the most helpful now i have the long electrodes, and vary the tens use with heat and cold patches depending on how the pain feels (hot pains i find respond better to cold, everything else to heat). and i rub some of my anti-inflammatory gel on my hips. ideally i'd take an anti-inflammatory tablet but tummy really doesn't like them! sometimes a gentle stretch and mobilisation helps, but not always. and i need to be very careful as sometimes this makes it worse. i wish my body could talk to me, would make things much easier!

my hips also seem to like being sat on my gym ball (maybe something to do with the angle? i dont know...) hopefully you'll find something helpful too!

fi xx

[cat117]

Poor you hun that sounds awful! I really hope they find something to help you soon but in the meantime have you asked about emergency referals? If you're in this much pain then they might be able to queue jump you at the pain clinic, even if just to give you temporary relief until they can make a proper appointment.

But if that isn't an option then, like Englishgremlin said, you might want to go to A&E and see if they can give you something or help in some way.

I really hope you feel better soon, *hugs*

[lil_miffy]

Physio still hasnt received the report from my hip xray but im seeing an ESP (specialist physio) on friday about the hips who should hopefully refer me to orthopedics.
I had a fall on friday and it seems to have knocked my hip into a better position so the pain has actually been abit less since but there are loads of other things going on at the moment. It seems my eds is just kicking off big time both with my joints and my GI system anad possible POTS too. As a result iv been more or less stuck to my settee for a few days and using my chair for getting around my flat so had less subluxations. I had a bad one in bed on sunday though with the bone in my groin snapping again.
My physio has reffered me to pain clinic so hoping that appt comes quickly.
When i fell the paramedic gave me morpheine and even with that i was still in some pain, but for me it was the least amount of pain iv been in for ages.
The dr couldnt get blood from my arms or hands so she had to take it from my groin and the tissue swelled right up and went solid. it waas so painful and the pain lasted for 2 days.
My gp seems to have had a personalty transplant and wasnt intrested today in anything i said so iv just got to sit and wait for appts to come through.

My implanon has stopped working so im wondering if the change in hormones is whats set everything off.

[cat117]

I found that when I reached the end of the 3yrs for the implanon I had more bad patches until I got it replaced. I'm never sure if things like that are coincidence though because the bad patches are so erratic.

Maybe you could try taking the pill which relates to the implanon until you have a chance to get it replaced? I think I was given Micronor (Noresthiterone) and told that it was the same stuff that the implant releases.

[lil_miffy]

I had my hip assesment with the specialist physio today. My xray report still hadnt come back from radiology but she said that the xray showed that my right hip is the wrong way round. Something about the hook shaped bone at the bottom of the socket is the wrong way round and the hip is also pushed forward. So my pelvis is wonky which im wondering if this may have contributed to my spine curveture and SI degenerations. I can see now when I look down that my right hip bone is further foward than my left but its something that you never notice unless someone points it out.
She is originally was reffering me to the orthopadic surgean or this. Ironically this is my good hip,my other hip, my bad one, didnt show anything very obvious bone wise however she did a full assesment of pulling, bending, prodding and lots of subluxing and said that the pain and clunking I have shows inpingment and buritis with lots of swelling in my left hip and uper thigh. I also have altered sensation in my left leg and the only reflex that responded when she test them all in my legs and feet was the one on my right heel.

She has reffered me for a mri of both hips so that its done for when i see the surgean.

I was expecting to be told i had dysplasia given how common a hip issue this is in eds so was very surprised with what she said. I cant believe iv been walkign around on a backwards hip for 30years and never known about it. I wonder if my left hip and left SI is as bad as it is becuase of walking on a wonky pelvis?

I know now why I stand and sit leaning to the left and why my left bum cheek goes numb alot quicker than my right when im sat watching tv lol.


I have no idea if the surgean will sugest surgery. I konw for inpingment they can either reshape the bone that is cuasing the frictin. if that doesnt work then a hip replacement is sometimes nessesary. As for the other hip i have no idea if thers anything they can do although I will be asking if the wonky pelviswill cause more spine problems especially with my SI joints.

Anyone else had either inpringment or a backwards hip?

[loosebones]

I have a problem with my hips at the moment and am wondering if anyone has any ideas.

When I am walking my hips hurt really bad and the resulting pain after is like I've been kicked in the hips yet I can happily sit on an exercise bike and ride without any pain. Does anyone know the cause of this or a way around this? Walking is kind of essential in my house and it's getting worse.

[nemonie]

Hmmm, maybe bursitis or a tear in the cartilage. I've had a tear before and it only hurt (well only really really hurt) on walking, not sitting. I tore it slipping in the bath and jamming the hip ball joint up into socket. Took several weeks to heal properly.

[Rosie]

Hi LB

Have you tried wearing 'shaper' pants (or granny pants as I call them)? The ones like cycling shorts, in fact lycra cycling shorts may have the same effect.
I wear them when my hips are bad and while they don't cure it, they do help me with th epain as rhey provide some support.

Rosie

[nemonie]

Rosie is right, spanx ones are very good for this purpose (power panties ) also good for holding errant hips in place.