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Hughes Syndrome APS Forum

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HELP PAIN MOVING, WALKING, RAISING FROM SITTING, SLEEPING!

MerylAnn profile image
7 Replies

Hi, I'm back again as am very disheartened with lack of knowledge from my local doctors and specialists due to my recent problems.

At the beginning of last year I started to have a few problems with my left leg - couldnt walk on it as well and was finding it dragginng a bit. If I woke in the night for the toilet, I couldnt put my left foot on the floor to walk to the toilet - my left leg was causing me to limp. Then after several months I had difficulty walking , causing a blood blisters on my one of my toes, again on my left leg.

From then it has escalated causing my hips and spine to be out of line and due apparently to the period of time this hasnt corrected itself, my body is completely out of sinc/line - and even though I was doing yoga twice a week up until the summer last year, I can't walk properly, sit properly or move when I try to get up from a seated position to a standing position. My back cannot stand straight - it takes me ages to try from a very bent over position to try to move into a straight up right position, and then my spine and hips are still out of line. I am suffering an a great deal of pain dispuite taking paracemtol regularly and have recently had to take co-odamol. As time is going on I am finding it more difficult, to walk, sit comfortably and even just try to relax without my back and thigh muscles going into spasms or becoming very rigid.

After seeing the hospital consultants yesterday, Spinal expert, and my physio today - I have been discharged as they are not able to advise what is happening and why - I should have been improving since doing the exercises over the last 8 weeks - but I haven't!! I am now seeing another specialist tomorrow, for orthopedics and hips.

Does anyone have anything similar or know what I may be suffering from?

Responses would be very grateful received.

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MerylAnn
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MaryF profile image
MaryFAdministrator

HI, sorry if I have asked you before, but you you been tested for vitamin B12 deficiency? Also your Thyroid, beyond the standard TSH which is usually all they do, as I know with an untreated Thyroid you can end up with Plantar fasciitis. if you are not having any luck I do suggest you night do what I did and several others on here, I went via Thyroid UK and did private testing, the ones I most recently did were Thyroid plus 15 which also included magnesium, D, iron, B12 and many thyroid tests, this then showed up what was wrong. An untreated thyroid, where we slip through the net, (same with unnoticed B12 deficiency, can cause body wide problems.

podiatrytoday.com/current-c...

I hope this helps in some way. MaryF

MerylAnn profile image
MerylAnn in reply toMaryF

Thank you for this information Mary. I am due to see my GP this week and yet another specialist tomorrow, so will ask for this.

MaryF profile image
MaryFAdministrator in reply toMerylAnn

Be aware that if you want more detailed Thyroid testing you will have to pay and do them privately, come back to me if you need more information. MaryF

Tucson profile image
Tucson

You've just described how I feel but I had a stroke on 3rd Feb and put my problems down to that and sitting in the same position a lot. I have an appointment on 28 Feb with the rehabilitation physio and will see what they have to say about it. I can't say I remember feeling like this after previous strokes but it does make sense as we're adopting awkward positions to walk because we're compensating for the bits that won't work.

MerylAnn profile image
MerylAnn in reply toTucson

Thank you Tucson for this inform, I'd be keen to hear what the rehabilitation physio says; although I haven't had a stroke just suddenly had aches & pains in my groin, legs and lower back which seem to be getting worse and is now making life very difficult and painful.

The recent spine and hip specialists don't feel they can help me.

Debbweb01 profile image
Debbweb01

Hi I'm sorry u r having these problems, but you may need vascular tests! I lost my left leg to APS! I DID NOT HAVE ANY OF YOUR SYMPTOMS! Just don't chance anything! If u have bad pain please don't dismiss it! Good luck and if I can be of any help please ask! GODSPEED

MerylAnn profile image
MerylAnn in reply toDebbweb01

I'm sorry about your problems. Can you tell me a little more about the vascular tests and who/where they are carried out? Also what happened to your left leg, if you don't mind me asking?

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