[jennq78]

I have CRPS in my left foot. I was treated and dx right away by an awesome dr and was put in to remission after PT. I was fortunate enough not to experience the severe pain that I could have. Don't get me wrong, I had pain, but it's bearable.

I'm concerned because about 3 weeks ago, my pain (the same I had before) is coming back along with temp changes.

Now I'm experiencing something new..... I've been getting cramps that don't go away with massage ( and BOY do those hurt) along with the feeling that I can't lift my foot at times. I have to think about walking without dragging my foot. It's not all the time, but has happened a few times.

Am I coming out of remission? Is this weak foot feeling part of the CRPS?

I will have to get a new dr because I have moved from VA to CA since the first episode. Not looking forward to dealing with someone new.

[cja1]

I would look into infusions with a bisphosphonate such as pamidronate or alendronate. Search bisphosphonates on this forum and you can see other threads with specific info about a journal article that supported this treatment and specifics about dose, frequency etc. Let me know if you have any other questions!

[Brambledog]

Hi Jenn,

Try not to panic although I know that's MUCH easier said than done!

Those muscle cramps could be something called contractures. They are something you can get with CRPS, and if not tackled aggressively they can result in some problems with limb position. I started having cramps and pains about a year ago and mentioned them to my physio, and she made sure I understood the importance of regular stretches and exercise, and I also massage the muscles daily. It all helped, and I haven't had them for months now.

I use Monoi oil from the body shop, it smells lush and my skin doesn't seem to object to it. I would suggest you start just gently massaging for a minute or so at a time, and then ask your physio to show you some massage techniques. Finish with some slow stretches when your muscles are nice and warm, and then make sure you gently wipe off the excess oil and cover your skin back up so it stays warm.

I hope this helps at least a little bit for now...

Bram

[SloRian]

Originally Posted by jennq78

I have CRPS in my left foot. I was treated and dx right away by an awesome dr and was put in to remission after PT. I was fortunate enough not to experience the severe pain that I could have. Don't get me wrong, I had pain, but it's bearable.

I'm concerned because about 3 weeks ago, my pain (the same I had before) is coming back along with temp changes.

Now I'm experiencing something new..... I've been getting cramps that don't go away with massage ( and BOY do those hurt) along with the feeling that I can't lift my foot at times. I have to think about walking without dragging my foot. It's not all the time, but has happened a few times.

Am I coming out of remission? Is this weak foot feeling part of the CRPS?

I will have to get a new dr because I have moved from VA to CA since the first episode. Not looking forward to dealing with someone new.

No kidding!!! Good luck with finding a doctor in California. On the good side of things, I grew up in California and just love it! We moved to Arizona 6 years ago, and I miss CA so much!!! What part of CA, if you feel OK about sharing?

One of the scary things about this disease is the remission aspect - it's pretty scary having that looming monster in the background. RSD comes up out of the blue - with me, it was post-surgical complications, and with my daughter, it was a simple stress fracture. We're both in remission - mine went away right before my first spinal block when I tore my rotator cuff, and my daughter's went away after a relatively new (and painless!) treatment called Calmare. However, she still has a LOT of pain in her leg and foot because she was in a surgical boot for 9 months (it refracted) and she has a massive case of plantar fasciitis. I don't know about the lifting the foot feeling, but perhaps the cramps are from plantar fasciitis? Is it worse first thing in the morning? We're trying out one of those boots that you sleep in that bend the foot back a bit - I'll update the board on how it works in a few weeks.

One thing that I hope you can do in California is to go to Yosemite National Park, one of the most beautiful places on earth. I still have pain issues because of fibromyalgia, and there's nothing like beauty to help take the edge off of pain. Blessings to you, and I hope you find a good doc soon and find some treatments that will put you into remission again soon!

[jennq78]

Originally Posted by SloRian

No kidding!!! Good luck with finding a doctor in California. On the good side of things, I grew up in California and just love it! We moved to Arizona 6 years ago, and I miss CA so much!!! What part of CA, if you feel OK about sharing?

One of the scary things about this disease is the remission aspect - it's pretty scary having that looming monster in the background. RSD comes up out of the blue - with me, it was post-surgical complications, and with my daughter, it was a simple stress fracture. We're both in remission - mine went away right before my first spinal block when I tore my rotator cuff, and my daughter's went away after a relatively new (and painless!) treatment called Calmare. However, she still has a LOT of pain in her leg and foot because she was in a surgical boot for 9 months (it refracted) and she has a massive case of plantar fasciitis. I don't know about the lifting the foot feeling, but perhaps the cramps are from plantar fasciitis? Is it worse first thing in the morning? We're trying out one of those boots that you sleep in that bend the foot back a bit - I'll update the board on how it works in a few weeks.

One thing that I hope you can do in California is to go to Yosemite National Park, one of the most beautiful places on earth. I still have pain issues because of fibromyalgia, and there's nothing like beauty to help take the edge off of pain. Blessings to you, and I hope you find a good doc soon and find some treatments that will put you into remission again soon!

I'm in Northern, CA- Modesto. My husband is from here. I visited Yosemite years ago, but would definitely like to go back again.

I have an appointment with a family practice Monday. I'm sure they will refer me out, but it's a start. I just hope they know what CRPS is .

So for now, when I feel up to it, I'm wearing heels (I know it's horrible and will cause me pain) since I pretty much know what's coming in the future. I love love love my shoes

I've gone back on my high does of Vitamin C too, that I think may have helped put me in remission before. All I can do is wait and see. Something we all know sucks. I'm trying not to stress, but these spasms are making me uneasy.

[jennq78]

Originally Posted by Brambledog

Hi Jenn,

Try not to panic although I know that's MUCH easier said than done!

Those muscle cramps could be something called contractures. They are something you can get with CRPS, and if not tackled aggressively they can result in some problems with limb position. I started having cramps and pains about a year ago and mentioned them to my physio, and she made sure I understood the importance of regular stretches and exercise, and I also massage the muscles daily. It all helped, and I haven't had them for months now.

I use Monoi oil from the body shop, it smells lush and my skin doesn't seem to object to it. I would suggest you start just gently massaging for a minute or so at a time, and then ask your physio to show you some massage techniques. Finish with some slow stretches when your muscles are nice and warm, and then make sure you gently wipe off the excess oil and cover your skin back up so it stays warm.

I hope this helps at least a little bit for now...

Bram

I need to step up the massage. The PT I had before used that and a TENS unit a lot. Thank you for reminding me.

I also see you have Celiac's too. I was diagnosed 4 years ago after 20 years of being sick. It's funny that if we all don't have enough other issues we have to go through this stupid crap

[Brambledog]

Hi Jenn,

Ahh, another lucky gal with the magical CRPS/coeliac combination.... As you say, no thanks, we already have issues to overcome that affect us every day - don't need anything else!! You do get fed up with it all...everything seems to be about restrictions...

I'm convinced there is a strong auto-immune aspect to CRPS, it's amazing how many of us also have coeliac disease. I keep hoping that the next research paper I read will contain that breakthrough idea that actually leads to a proper treatment. Gotta keep hoping lol

All the best

Bram.

[SloRian]

Originally Posted by jennq78

I'm in Northern, CA- Modesto. My husband is from here. I visited Yosemite years ago, but would definitely like to go back again.

I hope you can go again soon Just do NOT go during holidays in the summer!!!! Unfortunately, a LOT of people know that Yosemite is beautiful. Even though it's crowded in the central valley, it's still SO worth it, and there are plenty of places to sit and enjoy the beauty if you can't hike.

So for now, when I feel up to it, I'm wearing heels (I know it's horrible and will cause me pain) since I pretty much know what's coming in the future. I love love love my shoes

[CRPStweet]

jennq78 - I am also in Calif. I hope you are not coming out of remission. What high dosage of vit C were you on before that helped you? take care,

[jennq78]

Originally Posted by CRPStweet

jennq78 - I am also in Calif. I hope you are not coming out of remission. What high dosage of vit C were you on before that helped you? take care,

I can't remember if it's 500mg or 1000mg, so I am just taking the higher dose right now.