When I have a flare, it is hard to walk more than about three blocks as my legs feel like they will give out under me and it is hard to breath. Those days are rarer now that I am on low dose naltrexone. It also minimizes the inflammation so some of the pain in my knees goes down.
Yes it is - I prefer the compounded liquid (from a compounding pharmacy) so I can change the dose as I slowly titrated up per doctor's orders. I got up to 4.5 mg per day and did not find it as effective as 3.5 mg for me so we lessened the dose. My insurance covered the liquid when I bought a small quantity to see if it would work but did not cover it much when I got a larger quantity. Can't quite figure that out...
I could not find low dose naltrexone at any pharmacy...most only carry the 50 mg pills.
My "leg problems" began immediately - swelling and on my right leg, a rash on the inside of my right thigh and on the right ankle. This was April/May 2023. Two ER visits and a derm visit + PCP and lots of guesses and 7 different salves and nothing helped. Then my legs were both swollen - esp the right one. Had an extended ultrasound and no issues seen but was told it was lymphedema and to get wraps. Did. Used them faithfully. No change. THEN a "long COVID specialist" (quotes because I question their expertise) said, just by looking at my legs, it was lipedema and I had two choices - liposuction or massage. Neither was possible for a variety of reasons. I then got a strange rash - like teeny blisters - on my right lower leg and some larger ones on my thigh. Almost all on the right leg where the initial rash (NEVER biopsied or tested in any way) was. The lower leg "blisters" would open, the skin would dry and then the rash would keep moving around my leg.
During all this, I could barely wear any shoes and bought Birkenstocks to accommodate swollen feet. Then all of a sudden - literally - both legs were unswollen. My left leg looks like my leg; the right still has swelling around the ankle. It is the first time since the Summer of 2022 that I could again put on Summer shoes and my slippers and Birks are too big w/o socks!
My right leg hurts all the time. Yes, a feeling of heaviness, pain walking (as well as pain in upper abdomen that also makes walking difficult -- plus I have spinal stenosis and arthritis in my back and am 78 so walking, that I used to do everywhere, literally, bec I don't drive, is now impossible even from desk to bathroom, only about 7'.
Recent ER visit when I couldn't stand up at all showed lots of abnormal blood test results indicating possible infection and/or return of NHL - non-Hodgkin lymphoma ( with which I was diagnosed in 2007 and for which I had radiation.) PET scheduled in July - first appointment I could get.
My arms too feel very heavy. And from what I've read about COVID toes and rashes, it all likely could've triggered the NHL return or it's separate.
What's been so difficult is that so many long COVID clinics and specialists are no longer doing anything making it very tough to manage.
I did get a pedal thing for under my desk - tho' long COVID forced me to retire this year, I still use my desk and computer for much. It helps get my legs moving.
NO idea if we are all suffering from/dealing with the same "leg issues".
Hi @andiresh1971. Think many here have numerous different types of leg problems. For instance mine are vascular, shaking/pem, joint inflammation, edema, atypical muscle atrophy, stabbing/shock/constant pains, debilitating itch/burn rashes, …..Sure helpful coping found here thru keyword search for your particular issues as box breathing, low histamine food/drink, pacing,….some of my suggestions amongst so many others helpful posts here. Quickest healing to you🌈
Yes yes yes! Felt like someone poored gasoline on my right foot and set me on fire...one year eight months. . exquisite severe pain....pain specialist had no clue,then met an amazing lady doctor Caroline Flowers MD Safford AZ.. with her wise care... Now pain free!!!!!! I give her the highest recommendation....
My "leg problems" began immediately - swelling and on my right leg, a rash on the inside of my right thigh and on the right ankle. This was April/May 2023. Two ER visits and a derm visit + PCP and lots of guesses and 7 different salves and nothing helped. Then my legs were both swollen - esp the right one. Had an extended ultrasound and no issues seen but was told it was lymphedema and to get wraps. Did. Used them faithfully. No change. THEN a "long COVID specialist" (quotes because I question their expertise) said, just by looking at my legs, it was lipedema and I had two choices - liposuction or massage. Neither was possible for a variety of reasons. I then got a strange rash - like teeny blisters - on my right lower leg and some larger ones on my thigh. Almost all on the right leg where the initial rash (NEVER biopsied or tested in any way) was. The lower leg "blisters" would open, the skin would dry and then the rash would keep moving around my leg.
During all this, I could barely wear any shoes and bought Birkenstocks to accommodate swollen feet. Then all of a sudden - literally - both legs were unswollen. My left leg looks like my leg; the right still has swelling around the ankle. It is the first time since the Summer of 2022 that I could again put on Summer shoes and my slippers and Birks are too big w/o socks!
My right leg hurts all the time. Yes, a feeling of heaviness, pain walking (as well as pain in upper abdomen that also makes walking difficult -- plus I have spinal stenosis and arthritis in my back and am 78 so walking, that I used to do everywhere, literally, bec I don't drive, is now impossible even from desk to bathroom, only about 7'.
Recent ER visit when I couldn't stand up at all showed lots of abnormal blood test results indicating possible infection and/or return of NHL - non-Hodgkin lymphoma ( with which I was diagnosed in 2007 and for which I had radiation.) PET scheduled in July - first appointment I could get.
My arms too feel very heavy. And from what I've read about COVID toes and rashes, it all likely could've triggered the NHL return or it's separate.
What's been so difficult is that so many long COVID clinics and specialists are no longer doing anything making it very tough to manage.
I did get a pedal thing for under my desk - tho' long COVID forced me to retire this year, I still use my desk and computer for much. It helps get my legs moving.
NO idea if we are all suffering from/dealing with the same "leg issues".
Who knows whether covid or a virus could precipitate celiac disease. The person who showed me their rash from celiac disease has the rash on their upper butt. This was about 10 years ago previous to the covid era. Let me know what you find out. Susan
I am truly sorry about your experience with pain. I pray it all comes out differently than what they expect. Have you asked to be put on a cancellation list so you can get in earlier? This has worked for me several times. Good Luck
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Naltrexone is prescribed right?
Yes it is - I prefer the compounded liquid (from a compounding pharmacy) so I can change the dose as I slowly titrated up per doctor's orders. I got up to 4.5 mg per day and did not find it as effective as 3.5 mg for me so we lessened the dose. My insurance covered the liquid when I bought a small quantity to see if it would work but did not cover it much when I got a larger quantity. Can't quite figure that out...
I could not find low dose naltrexone at any pharmacy...most only carry the 50 mg pills.
My "leg problems" began immediately - swelling and on my right leg, a rash on the inside of my right thigh and on the right ankle. This was April/May 2023. Two ER visits and a derm visit + PCP and lots of guesses and 7 different salves and nothing helped. Then my legs were both swollen - esp the right one. Had an extended ultrasound and no issues seen but was told it was lymphedema and to get wraps. Did. Used them faithfully. No change. THEN a "long COVID specialist" (quotes because I question their expertise) said, just by looking at my legs, it was lipedema and I had two choices - liposuction or massage. Neither was possible for a variety of reasons. I then got a strange rash - like teeny blisters - on my right lower leg and some larger ones on my thigh. Almost all on the right leg where the initial rash (NEVER biopsied or tested in any way) was. The lower leg "blisters" would open, the skin would dry and then the rash would keep moving around my leg.
During all this, I could barely wear any shoes and bought Birkenstocks to accommodate swollen feet. Then all of a sudden - literally - both legs were unswollen. My left leg looks like my leg; the right still has swelling around the ankle. It is the first time since the Summer of 2022 that I could again put on Summer shoes and my slippers and Birks are too big w/o socks!
My right leg hurts all the time. Yes, a feeling of heaviness, pain walking (as well as pain in upper abdomen that also makes walking difficult -- plus I have spinal stenosis and arthritis in my back and am 78 so walking, that I used to do everywhere, literally, bec I don't drive, is now impossible even from desk to bathroom, only about 7'.
Recent ER visit when I couldn't stand up at all showed lots of abnormal blood test results indicating possible infection and/or return of NHL - non-Hodgkin lymphoma ( with which I was diagnosed in 2007 and for which I had radiation.) PET scheduled in July - first appointment I could get.
My arms too feel very heavy. And from what I've read about COVID toes and rashes, it all likely could've triggered the NHL return or it's separate.
What's been so difficult is that so many long COVID clinics and specialists are no longer doing anything making it very tough to manage.
I did get a pedal thing for under my desk - tho' long COVID forced me to retire this year, I still use my desk and computer for much. It helps get my legs moving.
NO idea if we are all suffering from/dealing with the same "leg issues".
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1 ReactionYes yes yes! Felt like someone poored gasoline on my right foot and set me on fire...one year eight months. . exquisite severe pain....pain specialist had no clue,then met an amazing lady doctor Caroline Flowers MD Safford AZ.. with her wise care... Now pain free!!!!!! I give her the highest recommendation....
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6 ReactionsAnyone who suffers from a strange rash should be checked for celiac disease (start with a blood test for this).
Thanks. They've checked for nothing!
Is celiac a result of COVID - or that is, triggered by COVID?
JE
Who knows whether covid or a virus could precipitate celiac disease. The person who showed me their rash from celiac disease has the rash on their upper butt. This was about 10 years ago previous to the covid era. Let me know what you find out. Susan
I am truly sorry about your experience with pain. I pray it all comes out differently than what they expect. Have you asked to be put on a cancellation list so you can get in earlier? This has worked for me several times. Good Luck
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1 ReactionMy back has worsened to an almost intolerable level. It all started after my bout with Covid!
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3 ReactionsThanks!!