Pain unbelievable: Im new to this I haven't been... - LSN

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Pain unbelievable

Stitchbaby
Stitchbaby

Im new to this I haven't been diagnosed yet I have been three different doctors and all just said the same thing Im just over weight and If I wanted to feel better to lose weight and sent me home so 3 to 8mouths have passed Im hurting more and more my feet are always swollen and red and now I have blisters and calluses on both feet I can not even walk now they hurt so bad it's brought me to tears in crying cause Im hurting so bad I went from a size 9 to size 14 shoe cause mine no longer fit please help me i dont know what to do anymore I cant take this pain no more

7 Replies
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Can you find your nearest lymphoedema clinic and call them for support? Can you call the LSN (Lymphoedema Support Network) and ask for advice? Your doctor should be helping you get the support and treatment you so desperately need.

I am so sorry to hear this. I am also over weight and I was diagosed less than a year ago. I had been on water pills previously trying to help my puffiness. Then i diagnosed myself. I took info I had printed frm the internet to my doctor. That helped. I had pictures of overweight people with legs like mine. Maybe you could do that? Ad yes if you can go to a Lymphedema clinic directly I would do that. Good luck!

Are both your legs affected too? Swollen to the knee or to the groin? Are your hands swollen too? Are you breathless all the time?

Where are you based?

Lynneza1
Lynneza1
in reply to Lynora

I had been diagnosed with BLOOD CANCER before I found out the cause of the swelling in my leg. A mutated gene caused that.

Then I found out I had breast cancer as well...and the lymphedema is the worst to deal with...some days are easier than others.

Hang in there.

Oh my darling so glad 3 lovely ladies have been in touch already. LSN Helpline number is 020 7351 4480. Phone tomorrow morning. They will understand what you are going through. Regrettably, and despite the best efforts of LSN, many GPs know next to nothing about lymphoedema.

You poor thing, so sorry to hear you are suffering, my mums legs have swollen and she has been for a heart echo, it came back normal thank goodness, but they are still swollen, they say its age, but im not convinced, some dr just don't know, please asked to be referred to a specialist so your symptons can be diagnosed, you shouldn't be in this much pain, and need to push them to refer you to someone who knows. good luck. xxxx

Oh you poor dear, I have also suffered severe pain and found that the heart specialists I was sent to know nothing about lymphedema but continued to treat me as if I had edaema in spite of my first diagnosis of heart strong , arteries and veins open and clear , no cholesterol problems therefore it has to be lymphedema! Process of elimination only. Now, after wasting three years of being given blood thinners which made my nose bleed violently, I have actually discovered that an MRI scan , and being injected with radioactive something-or-other is available to give me a definite diagnosis of chronic Primary Lymphedema. This is the one you inherit or are born with and apparently can not be cured. It is very painful and through muscle damage I had to stop walking. Now through reading I asked for a recommendation for very strong compression stockings , got measured for them at a specialist pharmacy and have been wearing them for a few days now. Almost immediately I felt the relief and the swelling has been alleviated due to more correct walking . The heavy compression stockings act as the muscles and do help a lot. Not easy to get on but I managed to get some with zips and can manage to put them on by myself. The difference is astounding and my friend and home help is as astounded as I am by the help they have provided. I am just sorry that I had to go through such shoddy treatment by the cardio vascular specialists who could not see beyond their own little specialist cocoon . My last recommendation was to lose 30 kilos of weight , and lymphatic drainage might help. This involved a journey of 120 kilometers by local ambulance ( which goes through all the villages before getting to the hospital) every day for three weeks , including weekends. I’m afraid that I was justifiably scathing about this idea . I just know that my body would not cope with such treatment. I made my decision on the principle that if I was bad enough for that sort of treatment then I should be in hospital . I very politely made sure that he was in no doubt about my feelings for his idea !

So, dear friend, please don’t ever think that it is your fault. It is most definitely not .

I am sure that with the support of friends who understand you will cope in spite of so many opinionated and uninformed people around, including medical staff ! Be prepared to face up to these people . But always be quietly spoken and polite- it has far more effect than putting up a fight or showing that you are hurt or upset. This weight thing will always come up as it is always a doctors last stand if he doesn’t have any other answers. Think of it as his weakness, not yours !

One very helpful bit of practical advice is to make sure you lay down for about three times a day on the bed , with your feet up above your head . No, - sitting in a chair doesn’t work, in fact it’s worse. Stay on the bed, feet above your head for 15 to 20 minutes. It’s very soothing.

Also , try to move around and don’t sit too long. Every couple of hours make yourself get up and move around for just a minute or too. Sitting too long isn’t a good idea. Sometimes it’s hard , but you will certainly feel better for that extra bit of effort.

Remember, do this a bit at a time. Don’t expect to feel any better straight away. And don’t be put off by the clever clogs who tell you to do 30 minutes brisk walk or run every day. It doesn’t have to be done all in one go at first. Five minutes at a time to begin with. Set yourself little goals to achieve but be careful not to overdo it. A little at a time.

Good luck. If you want to have a chat with a friend who has been through all those experiences or if you have any questions then I am here and will do my best to help.

BUT FIRST remember to ask you doctor to arrange for a proper confirmation that you do have lymphedema and what sort it is . This knowledge is very important as the Primary and Secondary are very different, as is the treatment .

A big hug 🤗 from me.

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