Hello!
 

Hi there,

My name is Lessa, and I'm from Canada. I haven't been able to find too many active forums about CRPS, and almost none that are from my locale. I've been dealing with a horrible disease for a bit now, and it finally has taken my ability to walk. When I was born, I was able bodied, now...Its all changed, I haven't yet got approved for a chair (so I'm using a rental), and its already frustrating me just what I can do while in it. I can stumble, really that's what it is a limping stumble, short distances but cannot stand or stumble for any real amount of time.

Our house isn't wheelchair friendly, our washroom and bedroom are up the stairs. Plus...being a Canadian Military row house its small, and turning around in places can be a nightmare! Its frustrating to not be able to cook for myself, not reach things I know I can otherwise, and simply crawl up those stairs.

Complex regional pain syndrome has taken my life away from me. I'm finding it hard to stay positive when in constant pain, and having lost the ability to do something I loved doing (going for nice long walks on trails). I end up staying inside, at home most of the time, because I feel like people stare at me, especially since my legs work, yet here I am in a chair. Its as though they're judging me for not being 'disabled' enough to require a chair!

It started in my right foot, early in June, and has since migrated to my left foot where symptoms are starting. Both of my feet are so painful I'm left with no other choice than to use a wheelchair, I've stumbled for months and finally I ended up collapsing in the parking lot from the pain. Thankfully my wife was able to help me and mostly carry me into the house. I get aches and twinges in my wrists, but ignore them and tell myself I'm feeling things, and my knees are terribly sore from crawling where I cannot bring my chair in the house.

CRPS has proved to be a miserable challenge. I'm in excruciating pain daily. It has made my legs hyper sensitive. My GP has been pretty useless, unable to give me much for pain killers. I'm going to a painclinic on Wednesday to be assessed for some sort of pain management. Lets hope it works. We aren't sure what caused my CRPS, though I have a suspicion it was from a sprain that happened in January. It was too painful for a regular sprain, took too long to heal, and just was off from the get go.

I'm here for support, and to connect with people. My wife is ever so darling and is the best carer a person could ask for, and I'm so lucky to have her, but sadly at times she makes me feel unable or silly, without meaning to. We're both swimming in unknown waters =(.

~Lessa

Hi Lessa,
Welcome to the family. Everyone in here is remarkable. Nobody chooses to be here but are always willing to lend an ear.
I can somewhat relate being in a wheelchair myself. My disability is a combination on full body CRPS and degenerative cerebral atrophy causing me to fall a lot.
Like you I too can use my legs and get funny looks when I'm seen walking, although very slowly, from the passenger door to the rear of my car to open the hatchback and pulling out my travel chair then peddling myself around. Most people hold doors and seem sympathetic but there are those who stare and I can almost feel their opinions of me. I've learned to just do what I can and the hell with them, lol.
But unlike you I've been fortunate to get help from a good insurance company.
When going up and down stairs in my house got tough they got me a stair lift and a wheelchair.
Take off the hand hoops on the wheels if you don't use them. That will narrow your chair a bit. I did and I go through doorways a lot easier.
This monster we have really sucks. I am sorry for you but glad you found us. If nothing else it's a good place to vent.
Again welcome.
Be safe...

Hello Lessa,

I am so sorry to hear about your struggles with this horrible disability. You have found a great forum with many highly active members that post on a daily basis. I hope that we are able to help by sharing our stories, experiences and opinions with you in some way or another.

It sounds horrible that your house is not handicap accessible. I can not say that I can relate to that other than my laundry room is in the basement where I have not been since late last year. I am glad to hear that you have a loving spouse to help with many of the things that you now find difficult to do. That for many of us is an absolute blessing. I wish you the best at your appointment on Wednesday. Until then, do not be shy about asking any of us any questions you may have. We are all a very supportive group and love to share.

Thank you both so much. I'm in Canada so its not the insurance company its the Doctor's themselves. I don't think they know much of CRPS, but really who does? As this chair isn't mine, I'm not too keen on removing the wheels.

The reason we can't have a stair lift is because we rent this place from the Canadian Military (my wife works for the military). We asked about a stair lift, but because most people are able bodied on the base, we were not able to get it. They don't mind putting in hand rails, but really its the stairs themselves that pose the greatest annoyance.

I do try and keep my feet mobile, by gently rotating them at the ankle, wiggling my toes (only until it hurts a lot then I back off). My left ankle gets so swollen up, that if I have to wear boots or shoes, I'm unable to. Not like I'm really able to any time due to the pain...But people frown upon you if you don't have shoes in the fall/winter hrmmm.

We are looking for disability friendly housing, as the stairs are like torture to me. So its just a matter of time.

Thank you so much, I'll definately be asking a lot of questions, and thank you for the support on my appointment! Here's hoping the pain clinic can do something.

Check this out for help getting up and down those blasted stairs:

http://www.acornstairlifts.com

Welcome Lessa,

I know how you feel on too many levels.

I was just recounting to my friend that I don't dare wear clothing with zippers, because I cannot move fast enough to get into the bathroom AND deal with a stuck zipper. Once was enough to literally be caught with my wet pants down on the first floor and no easy way of cleaning myself up, because everything I needed was upstairs. I did not have the wherewithal to even crawl. I recall lots of cursing and sobbing.

Can you get a porta-potty for downstairs? I know this is not ideal, but having one for emergencies could be helpful. If the pail is kept with water in it, it lessens the smell. When I took care of my parents I put one next to their beds so that they would not stumble in the night on the way to the bathroom. I never dreamed that within two years of donating all their handicap items I would need them for myself.

My life improved when I started taking Low Dose Naltrexone in June. I advise anyone who has CRPS to try it, because it is non-invasive, affordable and has few to no side effects.

Neurotin helps with the electrical pain, which I still have, but not like before. Keeping weight ( as in bed clothing) off my feet also helped me.

Showering with a lightweight gauzy cloth over my legs and feet helped, too. I hope you have a shower chair. I waited too long to get one. Epsom salts soaks help.

Please tell us more. Are your feet hotter or colder than the rest of your body?

We are getting a port-a-potty for downstairs. My wife actually helps me bathe I usually sit in the tub and soak for a bit then she'll help me with my hair and such, because I am trying to make sure my feet don't hit the end of the tub. On that note, why are tubs so short? Do they think we all stop growing at like 4 feet!? Gah!

The podiatrist I saw said my feet are 4 degrees colder than normal. In fact they're always freezing. When they get warm I'm worried because its not normal anymore. Usually if they're warm they turn purple. Most of the time, they're a shade of light blue, or grey and look...Oh so attractive.

Any type of heat hurts me, we've tried tiger balm back when we didn't know what was what. I screamed and cried until we were able to calm it down by putting ice on it. Which was another story about hurt. I'm getting an occupational therapist to come to my house, to fit me for a wheelchair, as well as offer a referral to get things to make my life easier. Then it should be covered by either my provincial medical care, or by our extended coverage.

Another part of the reason I don't walk is I only have about 30% if not less feeling left in my feet, and that's mostly on the top of my feet which doesn't help. I only feet pain and cold, nothing else. My wife has poked me with a pin and I didn't feel it, until she poked me in a particularly sensitive spot, then I jumped away like crazy.

I've tried Gabapentin didn't work, amatriptyline didn't work. I'm on Lyrica, and it doesn't really work, and Nortriptyline which doesn't work either! Plus I take tramadol and percocets. I'm a walking pill dispenser. I'm hoping the pain clinic can offer me some patches or something else that will ease the pain, its so unreal I've never felt anything like this pain before. It's caused my depression to worsen, and I have been suicidal (thankfully I was stopped) because I just want this pain to go away.

Most of us feel this way. I have been on so many different medications so far and none of them seem to help. Every month is a new one. I started with Norco 5-325, (Hydrocodone), then added in Gabapentin working up from 300 mg to now 600 mg 3x a day, then amatriptyline 25mg now at 75mg, Hydrocodone was bumped up to 10-325, methadone 5mg 3x a day, and now Fentanyl 25mcg/hour patch and percocet 5-325 for breakout pain. We all have our own list of what we have tried and what we are on now, but the sad part is, many of us have not yet found the right combination that works well.

I am sorry to hear that you have tried to take your life. I am glad though that somebody had intervened and stopped you. Life is precious. It may be a long process of finding relief, but there are a good number of doctors out there that could possibly find the right thing for you that provides enough relief to be able to enjoy life again. You have a great deal of support from many people here while you are looking for it.

Thank you Purple. It was a moment of dire desperation. I'm glad she stopped me, and I'm so glad to have found this place on the web. It validates what I'm feeling, because honestly I was feeling crazy for a while there, how can something just not cure?! Well apparently this monster is just one of those things. =(

But many many thanks, I'm going to be needing help and support, and will def. be looking for it here.

Dear Lessa,

Hello and welcome,

I am so glad you found your way to us. It is terrible to go through so much loss and pain and feel no one understands. We all do. You are not alone. We are constantly throwing lifelines and support each other's way, sharing setbacks and small victories.

Keep up the search for a doctor. It can take several tries but there are skilled and compassionate ones out there who will listen and do all they can to help.

I often ask when people are new if they have had adequate workup. If you have not had follow up MRI or imaging after the Sprain healed it might be worth a second look. Sometimes results are surprising and show something that, if addressed, may alter outcome.

I highly recommend seeing a therapist who works with chronic pain. Depression and anxiety are common in our set, because who wouldn't be bummed at the changes wrought in our lives? I too became terribly depressed in the beginning despite a normally upbeat disposition. For some silly reason I waited a long time to see a therapist, thinking my body would heal and I would feel better. Once I went, I was left wondering what took me so long. She used EMDR and hypnosis in my therapy, Both of which have shown good results with pain. I am so glad I went because I was in such a deep hole and couldn't get out of it. Therapy brought me back to myself, brought me hope and gave me coping skills to better handle my pain and life changes. Do not carry your burden alone, there is good help out there.

On crawling upstairs...have you tried hoisting up backwards? I did this for about ten months or so. It is an amazing tricep workout! And it saved my knees...the pant seats not so much, but hey.

Come see us and let us know how you're doing. I am sending hugs and healing love, :hug: