Sorry to bother you all with another one in a series of questions but I need some more advice based on your extensive experiences of this condition
I woke up this morning complaining of even more pain than usual - mum helped me to the bathroom where we noticed my balance problems are still not improving despite now being off Gabapentin (last tablet was 36 hours ago)
Once we got back into the bedroom I looked at my foot cos it felt "different" somehow
Overnight it has ballooned and is now swollen to about twice its normal size and the skin is really taught, though strangely hmy toes are normal size
It was sometimes a bit swollen but never like it is now
Has anyone experienced something similar and if so what can we do to help reduce the swelling
Please remember that in my case the ankle joint is stiff and held in an unnatural position (ie rotated to the side) and has been for the last 12 weeks and no amount of physio has maanged to capture any movement at the moment
I was weight bearing on it until 10 days ago when I underwent a Guanethridine nerve block and was put on Gabapentin hence thinking the balance problems were side effects of the new drug
Any advice would be great
Alison

Hello, Ali12, for a young lady, you certainly have more than average to cope with everyday. I'm sorry to learn of your RSD. I brought your introduction over here too, so others who can answer your questions will see it sooner.

Are you able to go to school regularly? Any cute boys to tell about?

Whoopsie, I meant, um... are into band or choir or art or anything?

Be patient for responses, kiddo, weekends are a little quiet here, but there are lots of helpful people here to help answer your questions.

Hi Alison,

I am so sorry that you are suffering at such a young age

we have other young members here too who I know will be along to welcome you and offer their support and shared experience of having to learn to live with the challenge of RSD while still so young.
Weekends are a bit quieter on the boards

The members of this group, young and old, are one of the most enlightened when it comes to knowing their illness and finding the best ways to cope with it, and they are also one of the most caring and supportive groups

I see Cindy has kindly also quoted your post here from the New member Introductions to help others here know a bit more about you.

welcome and I hope you will find the answers you are seeking here

Cheri

Hey Ali!

Sounds like you are having a really rough time at the moment. Coming off gabapentin is rough - many people do find it hard to do it and it can make the unsteadiness worse for a while - you have only been off it 36 hours so give it a bit longer. If you have done biology at school you might have covered how long it takes to get rubbish (like tablets) out of your kidneys and liver - it can take a couple of weeks sometimes which is why you sometimes go through something like withdrawel and then feel abit rubbish for a couple of days, as the medication is still sitting inside your body and making you feel bad!! I know how embarrasing it is to have to have your parents help you. I have RSD and another disease of my neurological system and am in a wheelchair and have to have lots of help from carers and my family and friends.

Swelling is unfortunatly a common issue with RSD and I remember many times going Oh, I now look like a balloon! my arm/ leg etc is now a million times larger! oops! and they get SO SO HEAVY!!!! But keeping it up and stuff does help - I said it in another thread.

About threads, please could you answer them? Just I sometimes don't know if you get my emails and as it takes me a while to type them it is hard to type the same thing again and again and again! Sorry to be difficult, but just a Cool, or an ok would rock!

I got this at 16 and it is very, very hard to live with, but, you get through it and at your age you have a very good chance of getting better

Loads of love and feel free to PM (private message) me whenever!!!

Frogga xxxxxxx

Hi Alison,

I know what you are going through, being 17 myself. I am not doing real well atm, so cannot do a long post, but I did a quick search and wanted to post the results here. I searched under "swelling" in the RSD forum, and I hope you look at the links... there's a bunch about using compression stockings to reduce swelling, shoes that will fit with swollen feet, and how to stop/ prevent the swelling:

ANY IDEAS ON HOW TO GET SWELLING TO GO DOWN? (different ways to help with swelling):
http://neurotalk.psychcentral.com/sh...ad.php?t=13537

SWOLLEN LEGS? (talks about using stockings that compress to keep swelling down, as well as homeopathic treatments):
http://neurotalk.psychcentral.com/sh...light=swelling

HOW DO YOU WEAR SHOES WITH SWOLLEN RSD FEET? (Talks about shoes that fit/ are easier to put on):
http://neurotalk.psychcentral.com/sh...light=swelling

I do know what you are going through, and if you need someone to talk to, I am always here. I know how much it means to have someone to talk to who knows what you are experiencing. Email me at anytime!

Sending you gentle pain free hugs, Alison!


P.S. Is this the swelling you are describing?:


And, keep the questions coming, it's fine!! I remember when I was first dx I had so many questions, and the folks here were great to answer them. I know how puzzling this all can be, and I'd like to help you where I can. This IS hard, and support is wonderful. Know that I am thinking of you and sending you ((HUGE)) hugs!

hey that looks like my feet??? where did you ge that? ha!
yes, swelling is all part of rsd, and i find i swell from weather, barometric changes, being on my feet too long, and then of course for no reason at all, since rsd has a mind of it's own.
i have been an neurontin or gabapentine, whichever you choose to call it, for many years and i do get that dizziness but it is not often and not worth going off my meds for. there are other meds to try though that may work better for you. everyone is different.
sorry you have the monster but welcome. joan

Hi Alison,
Welcome to the board.
I get swelling from the knees down, but mine is worse after I've been up for awhile not first thing in the morning. I have found that lying down with my legs elevated above the heart helps to take it down a little. Also, it helps me if I lay down and do leg lifts. RSD affects people differently and I when I first got it in my hand, part of my hand swelled while part atrophied. Weird. I hope others on this board can help you more.
Linmarie

Hi there - Its Ali's mum here
Just back from Hospital - the swelling has not gone down at all - indeed the whole of Alisons leg below the knee is swollen
Her Consultant took a look amd said he had never seen anything so bad in all of his years dealing with RSD and sent her for an Untrasound to make sure there were no blood clots
The test howed no signs of clots but did show that the muscles were extremely swollen so Alison was admitted to hospital for further tests to rule out compartment syndrome, cellulitis and myositis
The staff are quite positive that this will turn out to be a side effect of the RSD and nothing sinister but I cannot find anything which says where the swelling found in RSD is located - ie is it in the muscles or elsewhere
If anyone could shed any light on this I would be grateful as it seems to be one thing after another at the moment - with nothing positive to grasp a hold of !!!!

please keep us informed of how ali does. joan

hey ali, I hope you do better! I here you about swelling man you should see my arm and shoulder and hand all swollen I cant even close my hand, my foot swells so much also.

I think alot is the weather at times is it rainy? or is the weather changing I feel your pain as we all do.....HUGS from across the ocean