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:

The wait times for MRIs in Canada are at the very least a year, where I live its almost a two year wait. So the MRI would be useless, because lord knows how much damage a do before I get it =S I recently had a physical, before this pain started, so I was alright before the pain, now my reflexes in my knees are hyper reactive, and well, the rest is history.

I have a therapist for some serious abuse that happened in the past, but she knows my condition and has heard of it, so she was looking it up for me.

I can't hoist myself up backwards because it requires some use of your feet, and that's totally a no go =(

Its 225 in the morning where I am, I was awake around 130....from the pain, I'm staring at this screen trying to breathe through it. Like every night, I'll be up for a few hours before I can manage to lower the pain enough to go back to bed.

I'm trying to be positive, but yesterday was a very very bad pain day. Not to mention people were in and out doing repairs, so my house was cold which just made everything so much more worse.

I've also ran out of some of my pain killers, which isn't fun at all. Hopefully Wednesday will be awesome, don't see my doctor until the 17th =\

Anyways, sleep well everyone.

Lessa,

For months when I had my worst CRPS pain no one helped me, I think they thought I was exaggerating my pain. Every doctor suggested NSAIDs. I was NSAID naive, I never took them, but desperation motivated me and even though I took the most minimal amounts of these OTCs I damaged my stomach.

Prior to taking LDN what helped me somewhat was malic acid and magnesium. I read about this healing combo on an MS site.

Are you able to have pool therapy? I lost considerable bone during the months I could not put any weight on my right foot. Getting into a pool enabled me to put some weight on my foot, ankle, leg. At first it was through the roof painful, but it became less and less agonizing after each session.

Please forgive me for mentioning LDN again, but you didn't respond about it and I worry that you may have missed that part of my post.

Sorry about that Bio, no I haven't tried LDN my doctors have only prescibed what I mentioned a post or two (maybe 3?) back. I haven't tried pool PT, as my PT wants to wait until my pain is better managed. Not necessarily less pain, but at least able to manage it with something so I'm not completely suffering. She is a military PT and was the first one to suggest it was CRPS, she knows a lot about CRPS. Once I have better management tools, I'm going to approach her about strengthening again.

I don't take much OTC's, when it first happened I took ibuprofen 2 times a day, but my doctor suggested not to, since this was a long term thing, and he didn't want to have to repair my stomach AND my foot. Naproxen doesn't help much either, and is so much stronger so I don't take it unless I'm particularly inflamed. I haven't even heard of LDN, and I worked at a rehab centre and aw oh so many medications, prescription and 'non prescription/legal'.

Sorry to hear about the trouble getting imaging and getting up the stairs. The back up the stairs routine does require a bit of foot pressure but I found I could get up mostly with my arms. It is a challenge though.

I am glad to hear you have a therapist on board, that is great. If you get stuck you might consider adding a short time with one who treats pain specifically and who uses the hypnosis or EMDR, it is a very different approach from most therapy. What I really liked about those modalities was that they worked around the conscious brain right to the heart of things so we moved through issues pretty quickly. A real boon when one is bogged down!

I hope you rest better tonight.

:hug:

Lessa,

Please look into LDN, I believe I would be in a wheelchair if not for it. My pain lessened dramatically once I took it. I went from crawling to being able to climb the stairs. A curb was a mountain and my hallway stairs Mount Everest before LDN.

I agree with your PT about the pain, mine wanted me in the pool ASAP, but I could not do it, until after a month plus of LDN. I was terrified of the cold water, because I spent most of my time on the couch shaking under an electric blanket with a heating pad, while my sister was sitting sweating across from me with a fan directed on her.

Once I noticed the LDN was helping I started to gradually lower the temp of my shower and bath tub water to prepare me for my friend's condo pool water. It worked. Unfortunately, once the weather turned colder I found my local indoor pool is not quite warm enough for me. Also, I haven't regained enough strength to manage all that is involved in this seasonal pool exercise-wet hair, wet clothing, lockers, changing, carrying towels etc with crutches. It is horrible. When I finished using my friend's pool I sat in the sun until my swimsuit dried, wrapped a sarong around me and then my husband drove us home-it was so easy.

I'm going to be talking to an OT who can get me in touch with a Social worker, if I should need something for the pain I will be making sure to let them know. I'll keep the hypnosis and EMDR in mind =) Never tried other but it can't hurt to try!

Thank you, may you rest well tonight too. :hug:

I'm going to talk to about it either at my Pain Clinic appointment (if they do it) or at my Dr's appointment. Either way we'll talk it out, I'm going to do research, and we'll see if its right for me. Thank you so much for being so resourceful! Its a breath of fresh air. :hug:

Lessa,

I just wanted to let you know, if LDN is something that looks like something you do want to try, you will have to get all of the percocet and tramadol out of your system first. I would highly recommend trying it. I have not only because my pain management doctor knows nothing about it. It has helped quite a few people with CRPS and is also mentioned in Dr Chopra's video. If you have not seen it yet, it is very informative. I am surprised that no one has mentioned it yet in this thread. Here is the link if you would like to watch it.
www.youtube.com/watch?v=s3LKhOZ8mAM

Lessa,

Welcome to the board, I'm so sorry you have to be here. This monster that invades our bodies causes so many of us to struggle to do even the simplest of tasks. I'm sorry to hear you're struggling so much and I hope you find some relief through the pain clinic, and I hope you can find better accommodations for your needs. I'm sorry to hear you're struggling so much and I hope you find some relief through the pain clinic, and I hope you can find better accommodations for your condition. It's amazing how fast RSD can change our lives in an instant, going from enjoyable and active to immobile and pained.

I agree with finding a good therapist or psychologist who specializes in CBT or chronic pain disorders to add to your team of specialists. I've been seeing mine for four years now, and it has made such a positive impact on my life on my physical condition, and has really helped my emotional, spiritual well-being, and mental health. My RSD causes severe anxiety so it's important for me to keep stressors out of my life that heighten my anxiety, and to be aware of my triggers. You will find a lot of very useful information here and a lot of resources. Just remember you're not alone we are all in this together!

Sorry I haven't responded sooner. I went to the pain centre here in town, apparently its not like the pain clinic in the city nearest to us. The one here are just meant to be a support in conjucture with the pain clinic in the city. But I got sorted out on how to get the clinic (there's a free van I can take huzzah!), and I'm eager to go there, hopefully they give me some hope and something to help. Its all trained specialists in both places, for physical therapy, nurses, doctors (but they can't do injections and such), and therapies. They offer lots of pain courses, and a support group for chronic pain sufferers.

So there's good. Then there's bad, waiting for the pain clinic to make an appointment. And waiting to see my doctor because I'm almost out of meds! Ack!

Thank you all for your supportive replies, its helped SO much!

Up most of the night again. Found a new sensitive spot, just above my right ankle where my calf begins, its sooo ginger and sensitive and burny. How did I find this spot? Well I rubbed my leg and felt it and just groaned. This beast is convinced it'll eat my body!

At least its keeping up with the rest of my trouble spots, and is frozen cold. I keep feeling twinges in my hands (left more than right..makes sense I'm a lefty) but I refuse to believe these twinges are the beast. If I can just ignore them it won't hurt...right? Hoping to hear from the actual large pain clinic soon, so I can get in for treatment.

**Also side note, I was wondering if any CANADIANS (you must be Canada for this part) knows of any funding/financing for medical equipment for people with CRPS in Canada. I haven't found any. I live in BC on Vancouver Island if that helps**

welcome Lessa. i am sorry you have rsd but am glad you found this forum. everyone here are so supportive, kind and caring. i couldn't manage my rsd pain as well without all of them. i am sending soft hugs your way.

Lessa,

I am not Canadian, but a very good friend of mine lives across the river in Windsor, ON. She has been struggling with her own medical problems and has been a strong advocate for helping others get the medical attention that they need there for her condition. I can ask her if she has any recommendations. It may be a while, I used to see her every Friday, but lately it has been more like once a month. She spends a lot of time traveling. I will send her an email later today and see if I can get a quicker response.

RSD ME - thank you, I'm glad I found this forum as well. There were so many that were inactive and I was worried I'd never find a place on the net.

Purple - Oh that would be lovely if you could! Just let her know I'm in British Columbia, as some of the provincial plans are different based on your province! Thank you so much for your resources!

So far, here is what was sent to me:

"Hi Alaina,

I know the type of housing he is in. As I remember there are no single story military housing available. If he is the spouse of a military member he is covered for a lot of things by the Public Service Health Care Plan under his wife's policy. This is something that all (most?) Canadian military personnel have for their dependents. I would see if he has explored that route. Also his provincial medical plan should be able to help as well."

I don't know if this helps at all but it is something to start with.

~giggles~ I'm a woman too but that was so nice of him to suggest that. I'll look into both and see if I can get help from either of them. I have a gofundme page as well, but...Its hard you know?

I'm not sure if anyone with Crps if anyone tried the ketamine and clododine and gabapentin cream.....it's does good for me I spray my feet first with lidocaine so I'm able to put cream on ...I had lost my bottle of the cream made for me didn't know how much it worked until then highly recommend it

Sent from my SGH-I317M using Tapatalk

Hi Leesa and Foley. A late welcome to the group! Hope to be seeing both of you around in the future. ~mama mac

welcome!
 

Hi Lessa, I have been following your thread. In re-reading, I see I did not write yet. My apologies. Sometimes I am reading and remembering what people have written, and forget to write. :o Duh. Has to be the pain and the meds.

Welcome! :D
So glad to have you join us!
:hug:
DejaVu

Welcome Foley
 

Hi Foley, Welcome! :)

You are welcomed to start a thread on this forum, if you wish to do so. I think you will gain more responses, more welcomes, as you will be more visible to everyone.
I look forward to your continued sharing here.:)

:hug:
DejaVu

Hi Mama, Deja, and Foley thank you for the welcomes.

Also Foley welcome! I'll have to look into that cream, I know gaba didn't work when I took it orally. But perhaps if I just like soak in it? Lol.

Topical Meds
 

Hi Lessa,

Some of us use topical magnesium and/or topical medications.

Magnesium -
Many of us use Morton's Epsom Lotion. (Magnesium Sulfate)
Some use magnesium chloride. I have used both and am having the best luck right now with topical pure magnesium chloride, made by Life-Flo.

Life-Flo Pure Magnesium chloride: http://www.life-flo.com/magnesium/magnesium-oil.html

Life-Flo makes other magnesium chloride products as well: http://www.life-flo.com/magnesium.html

While these links show the products, the best prices can be found via an online search from various distributors.


I love the topical pure magnesium chloride. I get so much relief from pain, from spasms with this. I can sleep through the night, most nights, since adding this in to my daily regimen. I use it on my lower legs and feet 2-3 times a day. I do the longest foot massage with this in the evening.



As for topical medications:

Lidocaine - Avail by prescription at higher dose. Available OTC at 4% and marketed by Aspercreme brand. (Other brands are available, yet I have found them to be extremely expensive, while not superior to the Aspercreme brand of lidocaine. There is no Aspercreme in this, by the way.)

Compounding pharmacists can mix topicals according to a prescription.
This often includes drugs like: gabapentin, clonidine, ketamine, flexeril,
carisoprodol (Soma), DMSO, ketoprofen, bupivacaine (Marcaine), lidocaine, etc. I know I am forgetting some. :o

Here's a thread touching upon topical meds.
http://neurotalk.psychcentral.com/thread227525.html

I hope this helps. Please do ask any questions.

My best to you and to your wife.
:hug:
DejaVu

Hi Dejavu, do the topical a aggregate your pain at all with the application? I tried a capsaicin sp? cream once and it was terrible. I'd like to try these though if they help :)

Hi Megs,

I get significant relief using magnesium chloride, massaging it into my legs/feet. I believe my current relief is from continuing to use this. Over time, this has helped a great deal. I am very sensitive to meds and often cannot stick with meds. I am now taking additional meds, yet I feel the use of magnesium has been extremely helpful. It is the only way I have been able to get any sleep, via relief of pain and spasms.

The pure magnesium chloride "oil" will sting open cuts/wounds/lesions.
The magnesium sulfate lotion (Epsom) did not sting open skin, in my experience.
I do not know if the other magnesium chloride products (lotions, etc., as shown in the Life-Flo link, will sting open skin or not). I may try the chloride lotion soon.

I have had relief with other topicals in the past, including ketoprofen, bupivacaine. I have not tried ketamine. I have also had some negative reactions to some topicals, yet these reactions, for me, were systemic.

Some of our friends here us topicals I have not yet tried or cannot tolerate.

I do not have good luck with capsaicin. It seems to aggravate matters for me. I had tried capsaicin alone and then by first applying lidocaine and then capsaicin. Yet, still, even 2 weeks later, no significant relief. I am a bit suspicious of capsaicin use in these types of conditions, based upon my own experience. Some people find it helpful with peripheral neuropathies. I have tried it, many times, and it seems to aggravate my condition more than helping.

Please be aware: If a med or substance bothers you, as in an allergy or significant side-effects, when taken orally -- it is very likely to give you the same reaction when used topically.

A literature search will basically show there is no proven efficacy for topicals when used with CRPS . I think the studies have not yet been done. I also feel the responses may be individualized. Some people can use topicals I cannot tolerate, for example. It's truly a matter of simply trying options and finding what works best for each of us.

I hope this helps.

:grouphug:
DejaVu