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Hips and pain

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Hi Joana,

So sorry to hear about this. What about getting back in the warm pool

for some exercises - aquatics can be very theraputic as you know. That

might be something to ask the orthopedist about or go back and try on

your own. I would try anything before a hip replacement surgery -

including getting several opinions. Have you ever used Arnica gel/cream

on your hips, or also considered taking it in tablet form as well?

~ Gretchen

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Hi Gretchen,

Thanks for the idea. I will try anything to feel better. Tomorrow I will get

Arnica gel and tablets to see if it will help me! Also I will go back to the

pool too. I hope this time will be much warmer than last year.Take Care.

Hugs

Joana

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Joana:

I had terrible hip pain on the right side and Xray revealed thinning of the

front pelvis bone, osteoporsis. Doctor put me on Actonel, one 35 mg. pill a

week, plus calicum with Vitamin D. No more pain, but can't get on the bone

density table to see if it is working or not, (frustrating) so after two years,

I just keep taking the Actonel.

Donna B.

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DEAR DONNA B.,

Thank you for your email. I will check this medicine soon Actonel.

Did you have pain because of weak hips or osteoporoses?

Mine feels like if my hips is dislocated..very weird feeling I have

while walking really!

Today I decided to take Co-Praxamol for the pain this morning...I

just could not take it anymore. Could not sleep very well last night because of

this pain.

I will need to check with the doctor and find out why has been so

bad pain. I have double joints and maybe this condition does not help

me either.I have CMT type 1 , what about you?

When I walk I feel very funny and insecure,my walk is clumpsy and

wobble, I just do not know how to explain, sorry! Well, I will try to learn more

about this medicine as soon as possible.Thanks a lot for the help and support

Donna.

Take Care

Joana in London.

Ps: Donna B are you in London or USA?

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HI DONNA B.

I HAD A LOOK AT ACTONEL AT GOOGLE...I HAVE THE FEELING IS THE SAME

MEDICINE AS FOSAMAX. I HAVE BEEN TAKING FOSAMAX FOR FEW YEARS NOW.

IT IS FOR OSTEOPOROSIS.IT IS HELPING THE CALCIUM TO STAY IN YOUR

BODY.

I WILL TRY TO FIND OUT MORE BUT I GUESS IS THE SAME MEDICINE AS

FOSAMAX...QUITE SURE!!!

THANKS A LOT AGAIN.

JOANA

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I don't know if being double jointed has anything to do with CMT, but from what

I've read in the past, it seems like it. I am double jointed in my hands and I

used to think when I was growing up, it was cool to be able to pop out my hip.

Well, I'm 46 now and all the things I thought were " COOL " when I was a teenager

aren't cool anymore. Everything pops out!! lol.....

I was even a great ballerina, being able to stand on my toes and having a high

instep. It stinks now. That is why my neurologist knew from the beginning,

when she saw my high arches, etc. I had CMT...anyway, I think it is one of the

definite signs. Have a great day!!

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Dear ,

Thanks for your email. hahaha...I am 51 now and I can understand so well what

you said...The same applied to me now..lol!!!!!

Can you be on your tip toes now? I used to be on my tip toes before, but not

anymore...maybe this has to do with the progress of the CMT...

Funny, I always could wear my small high heels shoes, I guess to

compensate the short Achilles tendons I think...

I still have some heels but I can not feel the same as before while

walking...now my balance is not very good.

, I will go to see an orthopaedist soon and then we will see

what he would say...I will let you know ok? Thanks a lot.

Have a Great Day!

Joana

> I don't know if being double jointed has anything to do with CMT,

but from what I've read in the past, it seems like it. I am double

jointed in my hands and I used to think when I was growing up, it

was cool to be able to pop out my hip.

>

> Well, I'm 46 now and all the things I thought were " COOL " when I

was a teenager aren't cool anymore. Everything pops out!! lol.....

>

> I was even a great ballerina, being able to stand on my toes and

having a high instep. It stinks now. That is why my neurologist

knew from the beginning, when she saw my high arches, etc. I had

CMT...anyway, I think it is one of the definite signs. Have a great

day!!

>

>

>

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Hi Joana,

I to live in England (near Manchester) and I know it is quite common for other

countries to suggest a 2nd opinion, we both know it is not quite like that on

the NHS, all I could say is in Liverpool there is a dedicated centre for

neurological conditions and the best Neuro specialist I have ever met is Dr.

Fletcher, so if you can travel 'up here' if you were to ask your GP to be

referred then I would gladly give you the accomodation you would need, he really

is brilliant and does not bs anyone.

If you want to talk personally then my email is _Peggy2512@..._

(mailto:Peggy2512@...) We both know it is much different in England

Jill x

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Joana, and Donna B,

What I am concerned about is how easy it is for 'specialists'

to prescribe various drugs whether they be vitamins or whatever. In the UK we

only get the 'correct' medication, I feel that in the 'USA' you can be

perscribed many drugs in the hope it will help but if it doesnt then someone

will have a healthier bank balance - (drug comany) in the UK it may take longer

for the correct medication but at least it is what we require. The NHS was

devised to help people, not to make money and to be honest in the USA the

hospitals etc are about making money and I have first class info to prove it, as

(I have said prev. I am 50% american.

Jill

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