Still not diagnosed: I am unable to walk now due to... - LSN

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Still not diagnosed

ironkitten
ironkitten

I am unable to walk now due to severe swelling and pain in both legs,knees feet. I am trapped in my house because of steps and can't get out on deck side because of snow and ice. I am in chronic pain and do have hired home are side. I was supposed to go to Mayo clinic for assessment what's causing swelling. It's bilateral in both legs and feet. Pitting edema. Compression and pumps don't help. Hard to say what's causing it but my labwork shows elevated sed rate and crp. Indicative of possible autoimmune inflammatory process. Rhematologist this summer ran tests but all neg. For major autoimmune like lupus rhrmatoid arthritis. Both my knees are bone on bone. Very depressed and afraid! Any and all help appreciated. Now I am developing ulcers on one leg.

Thank you to anyone who has similar probs or ideas!

8 Replies
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Have you been in touch with any of the US based patient forums? Is there an NLN group in your state? Do you have any help, such as family, apart from hired home help?

I cannot provide help only sympathy. I am sure I have pain with my lymphoedema. Unfortunately the medics I have seen do not agree that the lymphoedema is the cause of the pain. Keep pursuing help.

Dear ironkitten, I'm sorry to hear of the difficulties you are having. I've only been out of the house for one medical appointment in over two weeks, but am able to walk very carefully with a cane. I'm in Montana, so understand the ice and snow issues you have, as well as bone on bone knees.

I also feel pain as my legs fill up with lymph fluid and expand. What helps me is I sleep on my back with both legs high on wedge and several pillows, so when I awaken the fluid is gone down considerably. I must put on the compression while still in bed to keep the legs from filling up so much once I'm upright.

Another idea: if the leg ulcer is not infected, you may benefit from a wound paste given me when my surgical wound would not close up and heal. It is from Coloplast. If you call the wound care nurse at your hospital, they could order it sent to you as was done for me. I was told the reaso it would not heal was that it was either moist from my shower or too dry as the day went on. Such wounds won't heal in either a desert or in a lake... have to be kept moist with the paste. It cleared up quickly. Not for anything infected though.

Best wishes for getting this figured out and your mobility back.

ironkitten
ironkitten
in reply to 2198224

Thank you so much for your kind note. It helps to know you aren't alone in this horrible struggle to find someone who knows about lymphedema. I will try the coloplast and more elevation! I have used duoderm hydrophilic bandage. I wish you well also and pray answers are coming. Please contact anytime I have few friends and divorced living alone!

You made my day by responding. God bless you 🙏😇

Dear Ironkitten,

And you please feel free to contact me anytime. I'm in Butte where, if anyone has the issues I have, there's no knowing about it, and little in the way of medical knowledge about them either. Had bladder cancer, so have stoma for uirine, and came out of that surgery with lymphedema of legs and trunk 2017, plus many small bowel obstrctions where a piece of the ileum was taken to create the stoma. I have husband and friends support, but know absolutely no one nearby with lymphedema, ileostomy, chronic kidney disease, COPD, etc.. So I rely on many online support groups for help. I hope you are close to a large hospital with plenty of good resources so you feel OK about calling to get the help you need. The sun's shining here today with 30 and 17 forecast. Certainly not enough water in our mountains yet this winter.

I will keep you in my prayers. ~mk

Oh my word you are going through the mill aren't you. I have been to the hospital today as because I have never been given a proper diagnosis just a letter 2 years ago said that I have probable chronic long term lymphoedema. I have never been given any treatment for this as not diagnosed. However my leg flared up last week and I am finding it increasingly difficult to walk although still working and on my feet every day and although I was seen by my doctor she said it looked alright but if it gets any worse to go back to see her and she may prescribe water tablets. I have a lot of pain, my skin is motley red, blueish and white, it feels tight in fact it looks like a pigs trotter. I am not sure what foot wear I can wear and what pain killers can anyone suggest. I feel very fatigued, is this normal as I feel rather overwhelmed with this and I am new on this as well as if you did not realise. Any help and support will be greatly received. Thanks for reading this and any support, suggestions you can give me.

kind regards.

Sounds pretty miserable. I am in same boat. No true diagnosis and now can't walk! I too feel unsure what to do! I've been on water pills without success and gabapentin for pain. My legs are huge and my feet and ankles are red and sometimes blue and white‼️Sounds like the U.S. Flag! LOL I feel like doctors are pretty ignorant at best. I've been too several Doctors without results. Keep looking and hopefully we get a diagnosis soon! Footwear is a problem with swelling and I am wearing extra large slippers that adjust so they won't cut of circulation. Many things can cause swelling: renal problems,heart disease, liver and the list goes on. If it is true lymphoedema diuretics won't help and can make it worse. Try to find hope there are people who know more! God bless you!

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