By Mitch on Monday, February 26, 2001 - 07:18 am:

Hi everyone!
I have just arrived here having been diagnosed with HMS by my latest (sound familiar?) physio.
For the last four years I have had chronic pain in my left hip, which I can only describe as similar to toothache, together with occasional stiffness in my lower back and radiating pain down my left leg. I can find three "pinprick" painful points in my hip and buttock which, when pressed, will make me hit the roof with pain!
I was initially diagnosed with sciatica (made sense at the time) then trochanteric bursitis (tennis elbow but in my hip) and I've had NSAIDs, cortisone injections into my hip, acupuncture, hypnotherapy, exercises, ultrasound and lastly (and the most unpleasant thing that's ever happened to me) an epidural steroid injection which has left me with the same pain as before and some..... Finally they did an ultrasound scan to see what's in there (unbelievable at this stage in the proceedings!) and the guy cheerfully told me he could find "no evidence of trochanteric bursitis."
Well. I cried and ranted and felt soooooo angry that after all this time of hopes being raised and dashed (have I mentioned I'm also on anti-depressants?) jobs being lost and relationships ending, I don't have what they were treating me for.
Now I have another diagnosis to play with.
My last physio referred me to this one for acupuncture as he was at a loss, she hasn't done any yet as she has actually been LISTENING to me and I have high hopes of finally getting somewhere in her care.
I'm telling you all this (if you're still reading, sorry!) because nobody else seems to have mentioned trochanteric bursitis. I'm wondering if this rings any bells?
Please let me know, I'd be interested to hear from anyone.
Thanks for your time
Mitch


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By Kathie on Monday, February 26, 2001 - 01:18 pm:

Hi Mitch

I have HMS and have congenital hip dislocation which was not diagnosed until I developed trochanteric bursitis in my late twenties. Trochanteric bursitis (inflammation of the hip joint) and hip dislocation are features of HMS. I empathise with you - it is very painful. At times I can't walk because the pain in my hip is so bad. I was offered steriod injections in the hip joint (under a general anaesthetic) but have declined so far and have managed the symptoms with a combination of rest, painkillers and using crutches to take the weight off my hip joint. I was told that steriods should be a last resort as they weaken the ligaments, can cause osteoporosis after continued use (those with HMS are prone to osteoporosis anyway so I don't want to encourage it!). Also, the local injection that is given with the steriod can incease joint laxity which is not particularly desirable if you have HMS :-) . When my hip is bad the bony bit that sticks out is soo painful I can't bear anything touching it - I also have prolems sleeping because I can't lie on that side.. (My other hip is affected too but not so badly...)

By Mitch on Tuesday, February 27, 2001 - 03:18 am:

Hi Kathie!
Thanks for that, it's good to hear from someone else that knows how I feel.
You're right not to bother with the steroids, for the good they do they are extremely painful and having had a few of the injections, I've found they become less effective the more you have. Another thing they do is leave scar tissue which only complicates things....
I sleep badly as well and I've found Sominex works best for me. I only use it occasionally when I find myself going nocturnal (can't sleep so awake until 4am then can't get up until late in the day......)
Sorry to get personal, Kathie, but, and don't answer me if you don't want to :0) do you find your hip hurts more just before and during your period? Mine does and it's hell! Not just for me either!

By Kathie on Tuesday, February 27, 2001 - 12:05 pm:

All my joints hurt more the week before I'm due on - what with that and PMT I'm a really happy bunny!!!

By Patty on Sunday, May 06, 2001 - 04:28 pm:

Speaking of "trochanter bursitis" hip pain, I was diagnosed with that too. I didn't like the doc at all and never gave him a second chance, but I did go through the PT he ordered and it didn't help one tiddlediwhit.
I would ride in the car - sometimes only 5 minutes - and climb out with terrible pain in my hip that made me walk bent over and limping. I discovered the cause was the bucket seat. I found and nice pad and it happens much less. I am finding now, however, that we are going to have to go to an automatic transmission or I have to stop driving - my SI goes out in heavy traffic.
I've had a very difficult time sleeping on my left hip on innerspring mattresses for years. I sleep on a "no frills" water bed at home and found, as the years went by, that the plastic of the bladder was too hard. Oh, the water moved and I sank down in the right places, but the bladder itself was too hard and I couldn't lie on my left hip at all. Sounds crazy. My hubby didn't understand either. I finally bought a one inch foam pad and put it on the bladder. Ahhh. I can now lie on that left hip most nights. In fact, my skin and joints all over my body feel better.
All to say, we have to keep plugging and hunting for what works for us.

By Tanya on Sunday, May 27, 2001 - 03:43 pm:

Hi everybody,

I found this website earlier this month when I
was searching for info on dislocations. After
reading all the various messages, i have
made an appt w/a rheumatol.

After 2 mos of some relief, this mon (as it has
been for the past 3 yrs.) has been horrible.

bit of history, i was born with a congenital
disloc. hip (rt). I had it repaired when i was 18.
i always sprained my ankles or wrists playing.
my grannies and i shared the ben-gay.

I have severe allergies to many trees,
grasses, cats, dogs, a lot of things. i was
diagnosed with ulcerative colitis when i was
21 (joint pains are part of this too) at 29 i was
diagnosed with mitral valve prolapse which
i've probably had forever-the dr thought i knew
about it.

a yr after my 1st preg. my rt hip started
bothering me. saw othopod-he didn't see
anything. during the last trimest. of both my
2nd &3rd preg i coulnd't even walk. since my
3rd preg. i've been sicker than ever-even
mising work.

last fall i saw a neurol. because my internist
said my nerves were inflamed (has anyone
had this?) they even thought i had MS, unitl the
MRI came back neg. the neuro. sent me to an
orthopod ( a jerk) who said didn't see anything
in the xrays and said i had bursitis "go to PT"
i've been doing the excercises given to me by
the PT after my hip surgery 17 yrs- something
else is going on!! So, i had to see my GI
because my ulcerative colitis was flaring.
before i saw this sight, i was just going to let it
go as part of the colitis. i now think that
something else is going on. (sorry this is so
long; its just great to tell this stuff to people
who might understand and not think i'm
CRAZY!:)

By Tanya on Sunday, May 27, 2001 - 04:00 pm:

Hi everybody,

I found this website earlier this month when I
was searching for info on dislocations. After
reading all the various messages, i have
made an appt w/a rheumatol.

After 2 mos of some relief, this mon (as it has
been for the past 3 yrs.) has been horrible.

bit of history, i was born with a congenital
disloc. hip (rt). I had it repaired when i was 18.
i always sprained my ankles or wrists playing.
my grannies and i shared the ben-gay.

I have severe allergies to many trees,
grasses, cats, dogs, a lot of things. i was
diagnosed with ulcerative colitis when i was
21 (joint pains are part of this too) at 29 i was
diagnosed with mitral valve prolapse which
i've probably had forever-the dr thought i knew
about it.

a yr after my 1st preg. my rt hip started
bothering me. saw othopod-he didn't see
anything. during the last trimest. of both my
2nd &3rd preg i coulnd't even walk. since my
3rd preg. i've been sicker than ever-even
mising work.

last fall i saw a neurol. because my internist
said my nerves were inflamed (has anyone
had this?) they even thought i had MS, unitl the
MRI came back neg. the neuro. sent me to an
orthopod ( a jerk) who said didn't see anything
in the xrays and said i had bursitis "go to PT"
i've been doing the excercises given to me by
the PT after my hip surgery 17 yrs- something
else is going on!! So, i had to see my GI
because my ulcerative colitis was flaring.
before i saw this sight, i was just going to let it
go as part of the colitis. i now think that
something else is going on. (sorry this is so
long; its just great to tell this stuff to people
who might understand and not think i'm
CRAZY!:)

By Kathie on Monday, May 28, 2001 - 01:23 pm:

Hi Tanya - I have HMS and congenital bilateral hip dislocation - unfortunately not detected until I was in my late teens so its not really treatable now... (My mum and my daughter also have it - my daughter had to spend the first six months of her life in a splint though her hips are okay now thank goodness!).

I was told to rest the hip and to avoid weight bearing. I was also given crutches and prescribed anti-inflammatories. Although I followed the ortho's advice, its never been right and every so often it gets really bad and I have problems walking. I also have difficulties sleeping as I can't lie on my side - the pressure on my hip is too painful.

I was also offered hydrocortisone injections into the hip joint (done under a general anaesthetic) but have declined so far as I don't want to build up problems for the future. My ortho said that I'd probably need hip replacements before I reach 50 and I'd like to defer this as long as possible (I'm a coward! :-).

I know it sounds drastic but could you try crutches/stick to see if it eases it (I *hate* using a stick - but if it helps and eases the pain then...). I was told not to stand for too long etc etc so I now have a stool in the kitchen so I can sit to prepare meals etc. Maybe you can review how you do things to see if you can make any modification that reduce the stress on your joints..

By Kathie on Monday, May 28, 2001 - 01:27 pm:

Just a correction to the above :-) - the HMS was diagnosed in my teens the CHD in my late twenties...

By nectarlove on Wednesday, June 16, 2004 - 12:14 pm:

You all are extremely fucked up - sorry to say so but... by husband suffers from a number of the symptoms you have described but he still manages to rock my world every night and his range of mobility is quite exceptional. I am not a doctor but my best friend also suffers from these symptoms as well - now I can not comment on his range of mobility but I can say that we had an earthquake yesterday and since it was his wifes birthday I think he was rocking her world. As I said, I am not a doctor but I would have to say that my recommendation would be to take at least 3 shots of Jim Beam, just before bed. In addition to this, I know you all must have heard about the benefits of honey bee nectar, well I have a better solution... After the Jim Beam, wash it down with a big gulp of your wifes nectar. If that doesn't cure you, at least she will stop bitching at you!
Happy nectar hunting!!

By bonedry on Wednesday, June 16, 2004 - 12:17 pm:

Dear nectarlove,

Do you have any "extra" nectar that I could sample??? I am heard similar stories to yours and I would be quite appreciative if you could help a brother out!!

bone dry