edema

[daisybid]

hi i have severe swelling in my ankles and feet ,my legs go bright red and are sore and painfull to touch. My doctor has done all tests and all were clear he does not know what is doing this. I am in a lot of pain and even if i tip off my legs it pains they are also very hard to the touch .Any ideas please

[Nitrobunny]

Hi! I can certainly sympathize with you as I've had the same issue off and on for years with no solid answers or diagnosis but there's a couple of observations I've made. For some reason it seems to be occur more in the warmer months. And secondly I'm not a fan of soft drinks or salt but an intake of either of those will make it worse. I'm not diabetic. If anything I tend to have low blood sugar but I've never been able to tie it to any of the autoimmune disorders I have. I have a prescription for Furosemide that I take at the first sign of fluid retention and it helps greatly pulling some of the fluid off of me. I usually take it for two to three days at the most because it gives me a headache and makes me feel badly but it's still better than just how horribly uncomfortable the swelling and pain is. I also know that tramadol seemed to bring it on as well which is one of the reasons I no longer take it.

I'm sorry but I probably wasn't much help. The best thing I do is rest and keep my feet up when possible when the swelling occurs. It seems to go in streaks. Take care!

Best ~

S

[daisybid in reply to Nitrobunny]

thanks for your help i am on furosemide for 2 months now and no change the swelling is there all of the time that i can live with its the soreness that i can't live with i have 4 dogs and just to give you an example if 1 of them even licks my leg the pain kills me don't know what I'm gonna do , thanks again for your help daisybid

[Nitrobunny in reply to daisybid]

My rheumatologist gave me Zanaflex to help with my fibromyalgia and to help me sleep at night because just the sheets moving across my legs was enough to send me into orbit or something like my husband touching my leg or knee when we were in a car could be enough to make me cry. It seems to me that I'm better about the pain and sensitivity after taking it but I only take it once a day. With the Zanaflex I get about three to four hours of really good sleep as opposed to not sleeping well at all before. As I said before I still have no real clue as to why it happens or what it's related to. I sure wish I did but the fact that it's causing you so much pain definitely warrants some serious attention. I went through so many doctors until I put together the team I have now. It was actually my neuro pain doctor who gave me the name of my rheumatologist, neurologist and back doctor. I've been at the end of my rope more than once and I honestly believe it's been pure luck that I have some of the docs I do now.

I wish you the very best and I sincerely hope you can find some help or someone to think outside of the box. I know the tests came back without a Dx but you're in terrible pain and that's just not an okay place to leave someone.

Best ~

S

[dwsurquhart]

Xanaflex is a fast acting, short duration muscle relaxer. Generally used by MS patients. I have seronegative inflammatory arthritis and take it to help me get to sleep. Does nothing for fluid retention though. I would concur with nitrobunny about furosemide (lasix) for fluid retention. I too take that when the fluid starts to stay.

When your blood work was done, what were your CRP levels?

Anything over 3.0 is cause for concern. Mine were over 159 and then started on Actemra (Tocilizumab) . Now CRP less than 0.2 and fluid retention is quite low.

If you do not know your bloodwork numbers, ask your doctor for them. You will then be able to research things yourself as most doctors do not have time to research things for all their patients. Become an informed patient, your doctor will thank you and you will receive much better care.

Cheers

Scott

[Hidden]

I have been getting more and more oedematous lately, since the weather became very hot.

One of my consultants took me off Mycophenolate because that can cause oedema. That hasn't made any difference.

I happened to see a GP whom I had not met before & he suggested that I might be dehydrated. I already drink a lot of water but I increased my intake & my oedematous ankles began to go down.

I know that my potassium levels have been low, so have been eating a lot of potassium rich food. I don't know whether it is all connected. [currently waiting to hear latest blood results]

[daisybid]

here in ireland you die before u see a specialist unless you pay there is a waiting list of 2 years which i am on

[lise78]

Hi daisybid I'm sorry that you're in a lot of pain .....I too have swollen feet ankles hands fingers and tummy I have a rare lymphoma disease called castleman disease it makes me have edema and a rare arthritis called enthesiopathy inflammation of tendons and ligaments from neck downwards I'm not saying you have these but it's worth checking it out just to be sure have you been tested for nerve damage ? Are you on adequate pain relief ? I didn't have a life till I was on morphine I couldn't move without pain before I had morphine !!! Hope you find answers soon take care lise78 😎

[daisybid in reply to lise78]

the only pain relief you get here in ireland is panadol an over the counter tablet the doctors said they do not know what is causing it so now i stay as i am they just dismiss you

[Ellioteva]

Hi Daisybird

My legs and ankles have been like that for so long but just after Christmas they got a lot worse the swelling between my knees and ankles was so bad the pain off the scale I saw a different GP and he said I had Vasculitis gave me some cream I had to go back two weeks later he then said he thought the meds I was taking for my BP might be causing it said I also had limphodemia not sure how to spell it he changed my tablets two weeks on the swelling has gone down dramatically

Hope this helps xx❤️Xx

[daisybid in reply to Ellioteva]

my doctors don't know so they expect me to just put up with it

[pennyan2]

I also have swollen feet, ankles and hands. I have been diagnosed with psoriatric arthritis and have been prescribed sulfasalazine. It does not help that much, so I have been trying to eat a healthy diet and elevate my feet and legs during the day. My rheumatologist suggested that I wear compression socks. They do lessen the swelling, but they are impossible to wear in the summer time!