Primary LE and Back Pain: Does anyone with LE suffer... - LSN

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Primary LE and Back Pain

alfie19 profile image
12 Replies

Does anyone with LE suffer from lower back pain or have back spasms.

I would like to know if the back pain is related to LE as DRs do not know.

I have been suffering with LE in both ankles feet an legs for over 50yrs.

It also affects my thighs and hips.

I suffer from extreme and chronic lower back pain so standing still is extremely painful and I am not able to walk very far otherwise my back goes into a spasm which stops me from doing anything unless I sit down.

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alfie19 profile image
alfie19
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12 Replies
Lynora profile image
Lynora

Yes, it is well known - anecdotally mainly.

Find yourself a good physiotherapist, and get them to work on your low back, glutes, hip flexors, hamstrings and quads - well, anywhere really!!! You may also want to get your 'gait' assessed, as any change in gait habits, will affect your feet - orthotics may help to stabilise your foot position. Do you wear compression?

alfie19 profile image
alfie19 in reply to Lynora

I have just finished a ten week of physio on lower back etc. GP and other medical teams have told me there is no cure for my lower back pain it is musculer so it will have to take its course and I need to pace myself to stop any flareups which happen often.

Lynora profile image
Lynora in reply to alfie19

What sort of physio? Any massage involved? Passive stretching?

alfie19 profile image
alfie19 in reply to Lynora

Massage and stretching.

I do stretching exercises daily.

alfie19 profile image
alfie19 in reply to Lynora

what is gait habits?

Lynora profile image
Lynora in reply to alfie19

How you walk.

alfie19 profile image
alfie19

I do have compression stocking but can not get them on my legs or even get them off. So I wear velcro wraps everyday. I was luckily enough to have them on prescription.

Lynora profile image
Lynora in reply to alfie19

Why can't you get them on? Because of the pain in your back?

alfie19 profile image
alfie19

yes everyday bending forward hurts my back and I cant reach my toes so looking for a stocking aid to help me.

Bending forwards or downwards to the fridge brings on the back pain and walking around the house is extremely painful taking codiene phosphate 15mg 4x daily on a good day i just have 2 tablets have been told by the hospital back pain which is muscular is not connected to Lymphoedema in my legs but as I have put on a lot of weight my stomach and hips have got bigger just wondering that it could be pressure against the nerves and the muscles.

I find it extremely difficult to exercise ie: cycling on stationery bike and walking is very limited due to the pain. GP and hospital say nothing can be done just take the painkillers before doing anything and pace myself as over doing it would cause more pain. My life is very limited at the moment and I have to take each day as it comes. Also I have over active bladder need the loo every 2hrs when I have a drink then I need the loo within the hour. Wake 3 x times at night for the loo even when stop drinking at 9pm. When I have a very bad day I am not able to go out of the house unless I am near a loo. I get very frustrated with this illness.

Lymphhelp profile image
Lymphhelp in reply to alfie19

The pool is the only type of exercising that helps me. As we carry more weight because of our lymphedema and only keeps the swelling and our backs worse. Taking warm baths frequently has helped me. Doing the exercises they recommend does not work for me. I've learned to listen to my body and you do what feels best. Having lymphedema is very complicated for me I cannot imagine a therapist trying to figure it out. I also keep my feet and legs moisturized morning and night which helps with putting my socks on. In the evening I work my socks lower and lower until I'm able to take them off. Take each day as it comes.

Lymphhelp profile image
Lymphhelp

Yes, I'm having my 5th back surgery, September 13. I don't believe one has to do with the other. It just makes it more difficult to heal after having my surgeries. I find that in the US it's very difficult to find physicians that are knowledgeable about lymphedema, primary. I get very frustrated because I find myself educating the physicians on my condition. I have the lymphedema in both legs and I am in menopause which I have found very unpleasant. I believe is due to further swelling from lymphedema. Prior to menopause I only had the lymphedema in my feet ankles and calves. Now it seems to have Taken on a life of its own, everything is bigger, larger, more swollen. I've always been thin and now I find myself growing in size.. I don't eat much and I don't use salt I also follow a healthy diet. I feel sometimes or shall I say most of the time I am at war with my body. I am very interested in this liposuction because I have not found a physician that has recommended it. After menopause I have also had leg pain and leg cramping that I never had before. Back to your question regarding your back. I don't believe it has anything to do with the lymphedema. My doctor told me the worst thing for my back is my lymphedema and the worst thing for my lymphedema is my back. So there you go.

I have Spina Bifida Occulta, and permanent nerve damage from a 'slipped disc' which causes severe Sciatica. I remember my ankles used to swell when standing, since my teens, and I've always had 'chunky' legs (could never get boots to fit my calves). 2-3 years ago, I had a hip replacement, and now at 62 (last year), I was diagnosed with LD. I can hardly walk at all now, so the weight is piling on!

Have your doctors ever sent you for tests for a trapped nerve? It sounds familiar to me - but there again, I'm just a lay-person......

Good luck.

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