[Megan403]

Hi everyone, my name is Megan an I just turned 27. On the Feb 4, 2013 I missed the bottom step in my house and tore ligaments in my foot and ankle. after months of the pain getting worse with an air cast on, a bone scan and some other signs, 2 podiatrist have diagnosed me with RSD.
I have been reading all I can about this and it sounds like I have a pretty good chance since my diagnosis is so early. I have been working like crazy doing exercises and i still have very good muscle usage. My major problem right now though is the cold. It was -43c yesterday and -35c today and the pain in my foot is so severe I can't get a sock on. All I have right now are anti-inflammatories, a voltaren cream and tramadol and its not doing a damn thing. So I have a few questions.

How do you deal with temperature changes that cause a bad reaction?
How do you manage the pain, especially getting through work?
Any suggestions on exercises that have worked for you?

It's really scary since this seems so uncommon. Of my 2 podiatrists only one of them has seen it once. Thank you everyone who responds, I really appreciate it.

[AZ-Di]

Megan,
So very sorry for your diagnosis and your need to be on here.
A big WELCOME however.
Yes, read every thing you can ! My physical therapist told me early on that
"you have to be your own best advocate with this".
We discuss fairly often how under educated the medical community is
regarding RSD/CRPS.
If you haven't found it already there's a good website RSDhope.org. They have lots of articles and information.
You need a GOOD pain management Dr. &/or neurologist who has experience
with this. They can advise some treatment options.
Always do your homework on anything invasive.
The only thing I can advise in the short term (I'm no medical professional) is
take at least 500 mg. Vit. C daily. It helps prevent spread and does no harm.
Insulate your foot from the cold best you can. Keep it moving all you can but
not to the point of extreme pain.

[lonewolf]

Welcome Megan,
Sorry you are hurting so much right now. I'm new on here 2. They are very helpful on here. I was on tramadol also it didn't do much for me either I was on 50mg every 6hrs. My pain Dr. change my meds. Still in alot of pain but better than before. Still learning how to get my foot comfortable & warm too, yea this weather has effected my foot also. I was diagnose with CRPS 2 with nerve damage last month. Hoping you feel better soon.

[Brambledog]

Hi Megan

Welcome to the forum, there are some great people here and a lot of support. You're in a good place as far as managing your CRPS.

There's a lot of advice already on these boards if you have a good look around. I can get very wordy in my replies lol, as folk here know but I'm having a bad flare myself and typing isn't good right now. Ah the fun of it! Here's a few bits tho...

Vitamin C 500mg daily to help prevent spread.
Keep moving gently as often as you can, stillness is bad for CRPS.
General strengthening exercise of your core muscles and limbs is important, if you get weak, you become more vulnerable to other things. And CRPS can end up causing several other issues which aren't fun.
Unperfumed Epsom salts either a few tablespoons in a warm bath, or wrapped in a damp cloth directly onto the burning areas can help. We need the magnesium and often don't have enough. Your skin absorbs it well.
Pacing and management are words we hear and dread, but they really do help. Learn to listen to your body, and if it complains a lot after a particular activity, then adjust things next time. You will have new limits on what you can do. Ad for how long. Never stop trying things, but don't push too hard or you pay big time
I find meditation and breathing exercises as effective as some of the pain meds. Give the Mindfulness ones a go (YouTube), or search on iTunes. Breathing exercises help you gain control when the pain is bad or you feel stressed.
Massage can be good too, but make sure you use natural oils and start gently to see how your skin reacts. If you go the whole hog and go for calming music, candles, wine and chocolate too, you can relax a surprising amount!
Relaxation is good - stress is very bad for your body systems, and constant pain is a big cause of stress.
Never ever EVER touch ice now. It can cause permanent tissue damage and spread of the CRPS. It can heighten pain too. Elevation and gentle movement are best for swelling.
Find out as much as you can about CRPS, on good sites like wiki, the NHS site in the uk, and RSDhope in the US. Steer clear of pictures though - they are of extreme cases, and will just scare you.
Be strong with any medics, from doctors to nurses and dentists. No BP readings on the affected limb, no blood tests or needles either. If a doctor doesn't feel right, or makes you feel either responsible for this or like a nuisance, find another. You need good support and a good doc who makes you feel like you matter to them. Meds can help a lot, so it's well worth it. Say how you feel, and say if you have concerns. Don't be afraid to print off info for them and hand it over, asking politely if they would read it. It's always worth educating them

Right, that's my lot for now lol. Take good care of yourself and keep posting on here. Sorry to be brief!!

Bram.

[Megan403]

Hi everyone,
Thanks so much for your advice. I will start reading those web sites and taking vitamin c right away. Hopefully it warms up here!

Bram, my physiotherapist told me to start exposing my foot to different textures, and small amounts of hot and cold like touching an ice cube on my foot to re train the nerves. But I should not be exposing my foot to ice at all?
I wouldn't be surprised if I shouldn't, I was going to ask my podiatrist before i did it anyways. It really seems like there is something off with this physio. He made himself out to be an expert on RSD and does not seem very concerned with me because I still have such good range of motion. Even after I told him I didn't a month ago have been working my butt off.
After what you guys said I think I'm going to start looking for a new physio who shows more concern for me I've already switched podiatrists and that has made a world of difference. Thank you!!

[Brambledog]

Hi Megan....

Absolutely definitely NOT. No ice, EVER. It has been PROVEN to cause tissue damage and promote pain and spread. Your physio is going by her knowledge of how to treat 'normal' people, and CRPS is not normal at all.

Definitely do the different textures thing - its called desensitisation and really helps a lot over time, but ice.....noooooooooooooo!

Im glad you are seeking another physio. There are a lot of physios who just don't know how to deal with CRPS. Whoever you see, print them off some info from a site like RSDhope and ask them to read it. If they are defensive or uninterested, then ask to see a different physio with some knowledge of CRPS. But whatever you do, don't use ice, and check before you follow any other advice from him as well, just in case. It's a self-protection thing. Sad but necessary

Keep up the good work though - it's definitely worth sticking with the exercises. Got me out of a wheelchair and off crutches - although it took 18 months, and I still have some weakness.

Take care and hope your day is going ok.

Bram.

[renhenne]

Sweet Megan,
Welcome to the RSD (Really Sucks Disease) club! A member that no one EVER wants to be, but everyone who is, totally and completely supports, prays and understands each and every member!!! We are an exclusive club of many, we are ALWAYS here for each and every one of us! Do NOT ever think that there is a question that is too stupid or a feeling that is too embarrassing! I promise you.... WE HAVE ALL BEEN THERE, DONE THAT & probably will again and again!!!

First and foremost, I would suggest that you get a KNOWLEDGABLE Pain Management Dr. to help you with your RSD! The good thing about your early diagnosis (if there is a good thing about an RSD diagnosis) is that you have a better chance of remission!! YES! I said remission!!! NOT A CURE, but remission none the less! So do some research and check for a knowledgable RSD/CRPS Pain Management Dr that you can get started with ASAP! Ask people on this site for info about a knowledgeable Dr. In your City and State. You will be surprised what info you will get!

2nd and I believe to be very important for any person with this very excruciating disease... anti depressants and possibly therapy to teach you coping tools for not only the pain, but all the emotions that come with it! This disease plays a toll on us not only physically but emotionally as well! Please think about this!!! Many patients I'm sure will tell you that there is guilt associated with .us regarding our with their loved ones and caregivers not to mention the endless pain. Just a suggestion to consider.

3rd find a STRONG support system!!!! This disease can have a way of getting you to isolate yourself! It's just natural because we don't want to put anymore on our loved one than we already have, and there are days that we can't do what we used to! REMEMBER..... Our friends and loved ones love us!!! Keep that communication open from the start!!!! It is VITAL!!! Stay as "connected as possible!!!! It is HUGE!!!

And 4th... Don't get discouraged! This disease has a way of letting you down! You will see posts from people who have WONDERFUL responses from some treatments, but your body and your RSD MAY or MAY NOT respond differently!!! This disease is a monster and it has a mind of it's own. Not all treatments work the same for everyone!!!! DONT GET DISCOURAGED!!! Stay positive!!!! REMEMBER, we are here for you!!! You may have RSD, BUT RSD CAN NOT HAVE YOU!!! Please feel free to email mail me AT ANYTIME!!! renhenne@aol.com or friend me on Facebook; Renee Duhon Henne, from Florida! I will be more than happy to talk with you about ANYTHING!!!

I hope this helps! May God bless you and keep you safe! Gentle hugs!!!
Renee', (RSD survivor and fighter for 10 years)