Hello, I'm new here. I've has RSD for 3 years and 9 months. It started in my hand and has spread to my legs. I can walk short distances but usually my knees start hurting so much I have to sit down. I have gotten used to this and know how much I can handle. What is confusing to me is that occasionally,my legs swell from the knee down. It feels like I have on tight knee socks. I don’t know what causes this. I will get a flare-up and it usually calms down in a day or so. This one has lasted four days so far. Yesterday I was sure my legs seemed bigger so I measured them, then measured again this morning. They were ½ inch smaller this morning (I am small so this is significant for me). I have had nerve tests done on them and the results were normal. My skin coloring and mottling is typical of my RSD and looks the same during these episodes. I don’t know if it’s inflammation or fluid retention or? Does anyone else have this happen to them?
Linmarie

Hi Lin, Welcome. I have rsd in my leg as well. Swelling is part of the rsd package. My left leg from my thigh down is a half inch larger than my right. It has been that way since the beginning. It is part of the rsd package for me. Like you I am very tiny so it is easily noticed. But, compared to the pain and the disability that rsd causes I don't pay much attention to the swelling. It's just a way of life now. Hope you enjoy being on board. Best wishes to you. Jeannie

I never really had a problem with swelling the last 7 years, but all of a sudden in the last month or so both legs are blimps from the kness down. My poor toes are stuck straight out, and I can barely wiggle the ones on the foot that works.


I wonder if that isnt helping my blood pressure?

Swelling appears to be part of RSD and it is one of the symptoms. More RSD academic people can probaly explain why - all I know is it can be very annoying! pitting oedema is not a good look! (I'm 21). Welcome!! I guess the basic way to get swelling down is exercise as the muscles pump the fluid back up the lymph system. Also, when you lie down have your leg elevated and ensure that you don't sit with your leg down for a long time. I think that it's tightening and loosening the calf which is good for reducing swelling as it pushes the oedema back up the veins or something. Another member here, In His Hands (IHH) wears oedema stockings.

Hope you get the help you are looking for!

Love

Frogga xxxxxxxx

Allen- I thought I was the only one that had this problem!! My toes stick straight out so badly and they don't want to move! I kept telling people that my toes felt strangely, but they look normal to everyone else!

As Frogga said, I wear compression stockings that really do help with the swelling. I have had a lot of problems with swelling, and this is the only thing that has *really* helped me. The compression is a bit tough to handle (especially if you have allodynia), but I know you can get different compressions. They also come in a few colors -so they can match your outfit - ... you might want to look into them. You can even buy compression stockings for your arms!

Here is a site:
http://www.jobst-usa.com/products.html

And another:
http://www.supporthosestore.com/index.html

I have Jobst stockings.

Elevation helps a little as do lukewarm epsom salts. Hope I helped in some way!!

My daughter gets a lot of swelling with her foot and ankle from the RSD. Her pain dr has recommended wrapping it in an ace bandage type of wrap to help get the swelling down. It is important to wrap above and below the swelling points for her. She also wears diabetic socks that help. She does have to keep trying to move her foot so we have had to take off the wrap and make her move it and then put it on. The drs have also said the swelling occurs from not enough weight bearing activities by my daughter so pool therapy and me making her stand has helped. Using a comfrey leaf wrap also helps reduce the swelling.

Hey RSDmum

What is a leaf wrap?

Thanks

Frogga xxxxxxxxxxxxxx

PS - I know about the feeling about toes..!!!

I'm just going to add a quiet little recommendation for giving herbal remedies a try. My friend with RSD who I care for has tried at least 60 drugs and remedies (and is scathingly skeptical now), did try some arnica gel I recommended on a horrendous bruise recently. Her bruise cleared very rapidly, to her amazement. I think herbs, because they are gentle and work differently than western medication, might be more effective for some people with RSD.
DISCLAIMER This is my own completely non-scientific opinion based only on the study of herbs and herbal medicine. But at least it is offered respectfully and humbly...

Frogga= Becca's alternative med dr recommended getting comfrey leaf. It smells like a tea and looks like loose tea. We found it in bulk at our local food co-op in the spice section. We fill a cloth full of the leaf, steep it in very hot water for 20 minutes, squeeze it out and put it on her foot. I saran wrap it to keep it from staining and dripping and then put a towel around it as she really likes the warmth. She leaves it on for as long as she wants (average 30 min). You can do it several times a day. Her pain dr and pediatrician also endorse it.

Mollymcn- I agree (with my own disclaimer) that alternative meds can be helpful. Becca also takes Boswellia and Turmeric twice a day with her arnica tablets. She feels out of anything, these have helped her.

I have always asked about drug interactions and so far so good.

sounds great RSDmom. Thanks!!

now for the dim bit - how does one saran wrap? LOL! sorry, I know I'm abit thick... ...

Thanks so much! I'm going to give it a try after the disasterous wheat bag episode ending in me getting burnt and nearlly burning down the kitchen in the flat in halls!! (luckily not my kitchen!) and stinking the entire flat out with burnt lavender. This will definetly be left in the competent hands of Leah (my carer)

I'm glad it's helped Becca - how is she doing?

Thanks so much again!!

Froggsy xxxxxxxxxx