Painful hips - what should I do?

[star gazer]

What a brilliant Idea spanx, never thought of that, I have bought an si & hip support belt which helps in the day but not comfortable at night, I have tried memory foam wedges but they only provide short term relief. I actually can't understand why the pain is sooo bad when laying on my side in bed have tried the pillow between the legs etc but would be very interested in trying out a tens machine, are there any good ones out there that have given some pain respite? also what would happen at a pain clinic? my neuro has talked about referring me as I take Tramadol and diazepam and a slow release tramadol at night which only takes the edge off the pain (it's why I'm awake now at 2am) but the PoTs doc says they are not great for autonomic probs as they can escalate the situation.Does the pain clinic used different types of pain relief? I have wondered if the hormone changes have made things worse in the past but this has been continuous for 2 months solid so maybe not. Do you ever get the feeling you just want to cut your leg off? because sometimes in the middle of the night it feels thats the only thing that will work, harsh and irrational but pain does that! Husband sleeps in a different room because I need the whole bed to try and get comfy too many pillows so no room for him too!!
Would love to here if someone has come up with a cure for the sleeping hip pain but in the mean time I am going to trawl the internet for some spanx and maybe some cycle shorts that can be my new pj trousers.
Hope all of you have a restfull night if possible and if like me you are still awake with it then I am thinking of you too and don't feel quite so alone while the rest of the house sleeps

[Lou661]

Have been dealing with hip pain since I was 16/17ish but just now they feel weird as much as they feel sore.

I cant sit cross legged anymore, which was always the most comfy way for me to sit, because when I do the front of my hips (in the groin area), my lower back and pelvis ache. I end up all stiff and can barely walk. Same thing happens if I don't concentrate when swimming and end up automatically doing breast stroke legs or other activities where my hips are splayed too wide, like if I turn over in bed without keeping my knees together (gotta make sure I have at least one pillow inbetween though because the outsidesof my hips and my buttocks end up sore if my knees ar pressed too tightly together). The thing that's bothering me as much as the pain is ow tey feel when I am walking.

My right leg swings through the step, it feels really low and my foot drags across the floor, sometimes it's actually easier to just slide it across the floor at home (laminate floors are great). With my left leg though the step is normal but it feels like my hip has to go up and over the thigh bone. The overall effect is it FEELS like I have this weird swingy hip waddle rather than a normal walk, but if I look at my shadow it looks normal and hubby says my walk doesn't look any different. Don't have any full length mirrors in a place where I can check this out and don't think my physio saw anything "wrong" either.

Has anyone else had this or something similar? Not quite sure how to deal with it.

Louise

[Retro]

Ask your physio or the pain clinic if they have a TENS machine you can borrow to try out. I borrowed one from mine then went out and bought the same model, it's fantastic, don't think I'd survive without it.

I tried "support pants/shorts" didn't seem to help me with but they were just really cheap ones.

Pain clinics are discussed elsewhere, as are meds

I've never actually thought wether my wonky hips or SI Joints are visible to others or how they affect my walk I use a crutch now. I have osteoarthritis in my left hip, the pain from that tends to be in my groin and made worse if my leg is rotated inwards, and when my hip shifts out of place the pain can be in my groin, butt cheek and/or just a deep ache right inside if you know what I mean. I find it's the SI pain more than any other that is unbearable and causes the most problems with getting around. Bending over and leaning on something helps relieve the pain a bit.

Lindsey

[Lou661]

Think I might have a TENS unit kicking around somewhere, bought one of the 3 way use ones for my 2nd preg (they were in boots at the time, maternity/general pain/muscle toning...so they claimed) and it was fairly useless as a maternity TENS so got chucked in a corner never to be seem again. I had fairly bad SPD during the last preg and was given a pelvic brace, which just made things worse, wonder if that'll help out?

Taking Diclofenac atm (when I remember, seem to manage to miss a dose at least every otherday) it takes the edge off and keeps me mainly mobile but I'm a bit reluctant to take anything else just yet. Have never liked taking meds much, probs because OTC stuff has never been any help so just learned to get on with it, so don't really want to start relying on them if I don't have to...good to have options in reserve. Physio is in at the surgery on Tues and Thurs,but gonna have to wait til Thursday to call her got a work meeting on Tuesday morning and OT with the bendyboy in the afternoon.

Cheers for the advice Lindsey

Louise

[nemonie]

I can relate to the 'odd' feeling in the hip/SI region you describe and often can't lift my legs up at the hip but have to drag them. My hips sublux (partially dislocate) all the time and dislocate quite a lot, even sat down and it also feels like my SI and pelvis pull apart too.

Cheap support/magic pants are no good, it's the expensive ones that work I'm afraid (spanx power panties being very good and not stupidly expensive if you think of them as medical aids). I also wear my SI belt when my hips are bad and that does help, best worn over my trousers I find. Do you have orthotic insoles for your shoes? That sounds odd when we're talking about hips, but when I let my feet roll (pronate) inwards then my legs also roll inward and my pelvis pulls apart the back and my hips fall out more. Have a look at our orthotics insoles threads for info.

[Lou661]

No orthotics as of yet...GP doesn't want a load of referals going out at once so waiting til I'm done with rheumy before doing anything else. Still not got a confirmed diagnosis so can see his point (kind of). I have started making sure I'm wearing shoes with good arch support though because I do roll in quite a bit without it, bit of a toss up between that or my boots (I love my boots, good ankle support and they always look good, got 5 pairs ).

Found my belt but not sure about trying it again. With my SPD I wore it over my clothes and it felt ok when I was wearing it but the second it came off (was advised to take it off when sitting and not to wear it overnight etc...as with most supports) everything...collapsed (for want of a better word) and I was in more pain than before I started using it.Scared of it being the same again. My pelvis went between pulling apart and sliping over itself with horrible grinding, now it just does the grinding bit at night sometimes which is an improvement. The pantsn will have to wait til I'm back at work from maternity leave,not enough pennies on SMP for "luxuries" like new underwear

[sheppeyescapee]

It's been about a month since I dislocated my hip and it is still really painful on a daily basis. Nothing out of the ordinary showed up on the xray. Think I might go back to the GP again as it shouldn't be hurting this much still after a month? Then again thinking about other dislocations they never seen to heal as they dislocate again before the soft tissue has any chance to heal properly

[Louisem1982]

I have a GP appointment tomorrow but i'm feeling a bit nervous...... Every now and again I get a horrible dull pain in my lower pelvis i'm a bit embarrassed about it which is why i've not persued it before.... also today i'm having to take tiny steps or I am having sharp pains in one side of my hip and the opposite knee - I don't even know if any of this relates to HMS? Does this sound familiar to anyone?? I will go to my GP but i'm not convinced I will get any help as they aren't the most helpful when it comes to HMS

[Rosie]

Hi Louise

Good luck with seeing the GO tomorrow. If your GO dpesn't know much about HMS/EDS-H then how about asking for a referral for someone who does? You can ask to see a rhuematologist (although not all of them know about HMS/EDS) or to be referred t one of the specialists clinics. If the GP says there is no point or nothing can be done, then say you want to be seen by a specialist because you understnd that they can reccommend treatments, therapies or aids that may help you. Also, have you had physio? If you have access to a physio who undestands about HMS/EDS-H then that can really help, not only with your current problems but to strengthen your muscles to help mre problems develop later on.
It is really common to have oe joint affected, and then another joins in, and so on. When HMS causes pain or problems in one joint the body tries to avoid putting too much strain on that joint, and this cana lead to more stress on another joint (like on the other side and then that joint struggles and you get pain, and so on.
Pain in the pelvis can be due to a variety of things, but if you don't mention it to your Dr then he/she can't do anything about investigating it. Whether it is part of your HMS or not, it is best to get it investigated if it is worrying you.

Rosie

[sheppeyescapee]

Still getting a lot of pain in my hips, around the pelvic brim area. When I was seen at stanmore they did flag up a concern about saddle anaesthesia and I also get pins and needles in my left leg and lose the feeling in it

[Superstottie]

I have been having to pop my hip over the last 6 months or so - when it doesn't feel quite right and I move it in a certain way and get that satisfying pop - but I have been really struggling with my hip for the last few days! I managed to turn funny in the kitchen on Tuesday, without lifting my right foot, and popped my hip out. I have never managed this before and nearly dropped to the floor with the pain (probably would have if I wasn't all to concious of the pain in the rest of my body!) I took me a few hours of lying on the bed with a heat pad on before I was able to pop it back into place, but it wasn't quite right. I then managed to do it again a few times Wednesday and yesterday, even just trying to move down the bed was popping it out. Since I have woken up this morning I haven't been able to get it back in, despite me being wedged with no less than 5 pillows at night to try and stop everything falling out! The pain is just horrible, and I cannot put any weight through my right leg at all now (was bad enough with pelvis and knee anyway!) Just totally fed up now, as just when I think that I am getting used to what hurts and what I can and cant do - something else goes on me!! Going to see GP on Tuesday about my meds anyway so might ask him about it if it's still playing up!

[Fluffym]

Hi Superstottie,

What can I say? Ouch. I've not had the problem you describe but it sounds pretty uncomfortable. Does the joint look dislocated? If it does do you think a trip to A&E might be in order?

Sorry, I'm really not being much help! I'm sitting here wincing at how you might be feeling. Hope it all improves soon.

Fluffym

[Superstottie]

Thanks Fluffym

I managed to get it back in, but it still feels really loose and painful, hopefully if I try to be careful with it over the next few days then it might settle a bit! I just wish I could put some sort of splint on it to hold it in place, the only thing I can think of is to tie something round the top of my legs at night to stop it flopping sideways!

Bex! x x

[Fluffym]

Hi Superstottie,

Have you thought of wearing support pants (cycling shorts style). I think someone else on here was talking about wearing them for support on here. You know the Spandex type?! I would not recommend them if you get stomach troubles - they made mine worse but they would give you support I would think. Only thing is I think they are quite expensive. Story of our lives really...what helps is expensive!!!

Fluffym

[Superstottie]

Thanks Fluffym - I do actually have a pair of those somewhere! I used to wear them under dresses to hold my saggy belly in, so might be worth digging them out and giving them a try, wonder if I could wear them at night?? Only problem I can see is I have lost over 3 stone since I bought them so they might not give enough compression now!! And I know what you mean about everything that helps us being expensive - I have a very long wish list, and I don't think Santa will be bringing me any splints for Christmas - no doubt some hideous item of clothing off mother dearest - should have given her my wish list really!!