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Raynaud's syndrome

Posted by Aimee T. on 5/28/02 at 14:22 (085463)

I have pf and have now been diagnosed with Raynaud's syndrome along with it. Raynaud's is a problem with circulation. I have yet to be able to get my feet stabilized due to both conditions. Hopefully soon. Anyone else out there with Raynaud's and PF. Could use some helpful info and support. Thanks!

Re: Raynaud's syndrome

Kathy G on 5/28/02 at 19:59 (085519)

Hi Aimee,

Well, I don't know how much help I'll be to you, but I, too, have Raynaud's and PF. The Raynaud's isn't that severe, I don't think. The first symptoms of it appeared when I was about 15. Until that time, I know I didn't have it because I could play outside in the wintertime much longer than any of my friends. I've had it so long, I really don't notice it that much. I need to start wearing gloves much sooner in the winter than most people (like September) and my feet get really cold if I stay outside for very long, especially without moving around a lot. I tried all kinds of sox and boots when my kids were little in the hope that I'd be able to play out with them, but had to settle for playing until I could feel my feet or hands start to ache, and then I'd come in. The doctor tells me that electric sox are wonderful but they weren't around when my son was little and I thought they were a gimic when I saw them when my daughter was young.

Other than that, my only other symptom of note was that when I sprained my ankle back in October, the second day that I was in the aircast and able to move about, my toes turned pure white and went totally numb! Thankfully, they saw me right away at my doctor's office but explained that due to my ciculatory problems, the extreme swelling in my ankle and foot was causing problems with the blood flow to my toes. He just told me to stay off the foot (DUH!) and when if it happened again, to plunge my toes into warm water for a few minutes. I only had to do it a few times.

Of course, you and I probably share the same problem with icing. It's not fun to put ice on your feet when it hurts so much, is it? I haven't found a way around it, though, so I ice whenever the PF gets bad. I find that using a bag of frozen peas in a pillow case works best for me.

So, I haven't really given you any ideas about coping with Raynaud's, have I? As to the PF, I don't know how long you've had it but recovery time can vary. These boards and the Heel Pain Book are great sources of information and support. Come back often. And if you have any specific questions for me, please don't hesitate to ask! I know how discouraging PF can be, as do all the other posters!

Good Luck,

Kathy

Re: Raynaud's syndrome

wendyn on 5/28/02 at 20:08 (085520)

I have been told that I may have this (not sure).

My sister in law has it very bad in her hands - winters are brutal for her.

Re: Raynaud's syndrome

Aimee T. on 5/29/02 at 07:22 (085577)

Hello Kathy!

Thank you for the response. I have had PF for almost 2 yrs. now. The PF is getting better but I can't yet seem to get the support I need so my feet will heal. When I treat the PF it works against my circulation. They are so sensitive because of the Raynaud's I can't tolerate orthotics and sometimes I can't wear shoes.

I have just started taking gingko biloba and magnesium for the circulation. I also will be starting vitamin E to help. I had surgery 2 wks. ago so I had to wait to take these things.

HOPEFULLY I am near the end of the battle. I am very limited for what I can do. I am out of work on disability since the beginning of April. I could go on and on about this long ordeal but I'm sure you are familiar.
Have you had a hard time wearing orthotics or shoes themselves?

Thanks again for your help!

Aimee T.

Re: Raynaud's syndrome

Aimee T. on 5/29/02 at 07:27 (085578)

Hello Wendy!

Thank you for your response to my message. Sometimes a person can have Raynaud's and it does not cause the extensive problems I've had. I have just started taking Gingko Biloba and Magnesium and will begin vitamin E
soon. Hopefully these will help and then I can begin to really treat the PF. It's very difficult when you have more than one thing to treat.
Thanks again for your response!

Aimee T.

Re: Raynaud's syndrome

Aimee T. on 5/29/02 at 07:33 (085579)

Kathy and Wendy,

I may not have accurately submitted my responses to your response. I don't think they are displayed where I thought they should be. Please excuse my errors or the computers errors. I hope you both are able to read the responses. Thanks again.

Aimee T.

Re: Raynaud's syndrome

wendyn on 5/29/02 at 08:48 (085587)

Aimee - do you smoke?

Re: Raynaud's syndrome

Aimee T. on 5/29/02 at 09:21 (085589)

Wendy - no I don't smoke. Never have. I know this is not good for someone with Raynaud's.
Aimee T.

Re: Raynaud's syndrome

wendyn on 5/29/02 at 10:46 (085605)

That's good to hear aimee!

Someone told me once that Raynaud's occurs almost exclusively in smokers (I don't know if that's really the case or not).

My sister in law was a heavy smoker - the doctor told her that she absolutely must quit, and she has.

Re: Raynaud's syndrome

Kathy G on 5/29/02 at 12:51 (085617)

Hi Wendyn and Aimee and everyone else!

Well, I don't smoke either, never have. What I find really interesting in this discussion is that I have such sensitive feet that my podiatrist calls me his 'princess and the pea' patient! When he made my orthotics, he made them soft and got the type he would use for people who have arthritis because of the sensitivity of my feet. Never once did he or my family doctor mention that the Raynauds could be contributing to that sensitivity.

Before I had children and retired from the full-time workforce, I had lots of shoes because I just love shoes! No, I never wore high heels or pointed toes. I didn't wear the pointed toes because they hurt my feet and I didn't wear spike heels because I am a klutz and thought I looked like an idiot trying to walk in them. But even back then, the guys in the shoe stores would cringe when I came in because it would take such a long time to find a comfortable shoe for me! And if there was the slightest crease in the liner or any irregularity, I'd be able to feel it. They used to say that they could sell the shoes to someone else because the normal person wouldn't even feel what I was feeling. If I found a comfortable shoe, I would buy it in at least two colors because it was so hard to find shoes that I thought looked good and felt good, too. I wonder if that hypersensitivity was due to the Raynaud's?

The only time I have ever done a search online on Raynaud's I found very little information. Have either of you found a site that gives some comprehensive info? I do know that Raynaud's is supposed to be more common in people with Fibromyalgia.

Sorry I rambled but this is quite interesting to me. Thanks for any information!

Re: Raynaud's syndrome

Aimee T. on 5/29/02 at 14:25 (085627)

Hello Kathy and Wendy,

I don't yet know of any sites that are really helpful for Raynaud's. Most I have found are geared towards the hands.

I too love shoes but I only have two pairs I can wear at this time. My closet is full of shoe's I would love to wear. Maybe some day.

Kathy, what type of orthotics do you have? I have not been able to tolerate any. I keep re-injuring my feet. Tomorrow I may be getting
removable casts so that my feet will have time to heal.

The only thing I leave the house for now is usually doctor's appointments.
If I want to go to a store I need a wheelchair or a motorized scooter.

Anyways, I often have compared myself to the 'Princess and the Pea'. I remember someone giving me some handmade slippers long ago and I could not wear them because I could feel every piece of yarn. It was so uncomfortable.

Are either of you taking anything to help with the Raynaud's?

Thanks again - this has really helped!

Aimee T.

Re: Raynaud's syndrome

Kathy G on 5/30/02 at 08:43 (085749)

Aimee,

My orthotics were custom-made by my POD. He has one of those computer gizmos (now there's a technical term!) where you walk across a pad that's hooked up to a computer and he puts in the pertinent information and a pair of orthotics are created for you based on the computer printouts. It took me much longer than the average person to break them in. He had me wear them for ten minutes one day, 20 the next, and then stay at 30 minutes for, I think it was a week. Then I gradually increased the time from there.

I'm sorry that you can't get out and have to depend on motorized scooters or wheelchairs in the stores. It is a humbling experience to be in a wheelchair. Back in October, when I sprained my ankle, we had a trip planned for Florida and we went to Epcot but my husband had to wheel me around in a wheelchair. I'm glad that we went but I sure didn't like that feeling of helplessness! I recently got a permanent handicapped placard for my car; the other two were temporary, and it was not an easy thing to do. I only use it when my feet are really bad but it's a tough feeling to
admit that you've reached a point where you need it.

No, I don't take anything for the Raynaud's. I don't even know if there's anything you can take. As I say, mine isn't that bad and I've had it so long, it's just kind of a way of life.

Take care.

Re: Raynaud's syndrome

Janet C on 5/31/02 at 05:40 (085881)

Hi Aimee ~

I've been informed by my Drs. that I also suffer from Raynaud's Phenomenon, and it's just another symptom of the RSD/CRPS, which occurred as a result of failed PF and TT surgeries. I also have to use a wheelchair or motorized scooter whenever I go anywhere.

I used to have a closet full of shoes, but I gave them all away because I couldn't wear them anymore. So now I only have two pairs of slip-on shoes, but I can barely stand (no pun intended) to wear them! And I can no longer wear socks, my feet feel claustrophobic!

Heating pads work well to warm up cold tootsies, so does an electric blanket. And I take Calcium/Magnesium/Zinc supplements, which my Drs. told me will help with the muscle spasms and tremors.

I think one of the most promising treatments on the horizon is the use of the HBOT - HyperBaric Oxygen Treatment. It is known primarily as a chamber that they use on SCUBA divers, to prevent them from getting the bends. In short, it forces Oxygen into your Oxygen-starved extremities, and has had excellent results when used to treat a variety of diseases and illnesses. They have been using it successfully in Europe, and are beginning to have equal results here in the U.S; but it's VERY expensive, and most Insurance Co's won't cover it.

Best wishes Always ~ Janet

Re: Raynaud's syndrome

john h on 5/31/02 at 10:09 (085892)

Janet: you know they also make electric socks (battery) if you are so inclined.

Re: Raynaud's syndrome

Janet C on 5/31/02 at 11:01 (085902)

Battery Socks?!? :o\ With your quirky sense of humor, I'm not sure if you're pulling my leg or not, John! But, they sound plausible! Do they get toasty warm? Honestly, I can't comfortably wear socks anywore, because I don't like anything on my feet... or my legs, for that matter. Whether it's Raynaud's or RSD (I think the symptoms overlap), having anything touching my skin is painfully annoying.

But I thought of another recommendation for how to relieve the bitter cold of the extremities; it feels good to soak in a nice, long, hot bath. I just need to work on my jacuzzi room - (my oldest daughter was using it for storage of furniture for the past year) clean it out, and fill it back up with warm water, and I figure I'll start my own aqua-therapy at home!

With Warm Wishes ~ Janet

Re: Raynaud's syndrome

john h on 5/31/02 at 16:59 (085936)

Janet: no fooling, i see the heated socks in a lot of magazines and in particular camping or outdoor type magazines

Re: Raynaud's syndrome

Kathy G on 5/28/02 at 19:59 (085519)

Hi Aimee,

Well, I don't know how much help I'll be to you, but I, too, have Raynaud's and PF. The Raynaud's isn't that severe, I don't think. The first symptoms of it appeared when I was about 15. Until that time, I know I didn't have it because I could play outside in the wintertime much longer than any of my friends. I've had it so long, I really don't notice it that much. I need to start wearing gloves much sooner in the winter than most people (like September) and my feet get really cold if I stay outside for very long, especially without moving around a lot. I tried all kinds of sox and boots when my kids were little in the hope that I'd be able to play out with them, but had to settle for playing until I could feel my feet or hands start to ache, and then I'd come in. The doctor tells me that electric sox are wonderful but they weren't around when my son was little and I thought they were a gimic when I saw them when my daughter was young.

Other than that, my only other symptom of note was that when I sprained my ankle back in October, the second day that I was in the aircast and able to move about, my toes turned pure white and went totally numb! Thankfully, they saw me right away at my doctor's office but explained that due to my ciculatory problems, the extreme swelling in my ankle and foot was causing problems with the blood flow to my toes. He just told me to stay off the foot (DUH!) and when if it happened again, to plunge my toes into warm water for a few minutes. I only had to do it a few times.

Of course, you and I probably share the same problem with icing. It's not fun to put ice on your feet when it hurts so much, is it? I haven't found a way around it, though, so I ice whenever the PF gets bad. I find that using a bag of frozen peas in a pillow case works best for me.

So, I haven't really given you any ideas about coping with Raynaud's, have I? As to the PF, I don't know how long you've had it but recovery time can vary. These boards and the Heel Pain Book are great sources of information and support. Come back often. And if you have any specific questions for me, please don't hesitate to ask! I know how discouraging PF can be, as do all the other posters!

Good Luck,

Kathy

Re: Raynaud's syndrome

wendyn on 5/28/02 at 20:08 (085520)

I have been told that I may have this (not sure).

My sister in law has it very bad in her hands - winters are brutal for her.

Re: Raynaud's syndrome

Aimee T. on 5/29/02 at 07:22 (085577)

Hello Kathy!

Thank you for the response. I have had PF for almost 2 yrs. now. The PF is getting better but I can't yet seem to get the support I need so my feet will heal. When I treat the PF it works against my circulation. They are so sensitive because of the Raynaud's I can't tolerate orthotics and sometimes I can't wear shoes.

I have just started taking gingko biloba and magnesium for the circulation. I also will be starting vitamin E to help. I had surgery 2 wks. ago so I had to wait to take these things.

HOPEFULLY I am near the end of the battle. I am very limited for what I can do. I am out of work on disability since the beginning of April. I could go on and on about this long ordeal but I'm sure you are familiar.
Have you had a hard time wearing orthotics or shoes themselves?

Thanks again for your help!

Aimee T.

Re: Raynaud's syndrome

Aimee T. on 5/29/02 at 07:27 (085578)

Hello Wendy!

Thank you for your response to my message. Sometimes a person can have Raynaud's and it does not cause the extensive problems I've had. I have just started taking Gingko Biloba and Magnesium and will begin vitamin E
soon. Hopefully these will help and then I can begin to really treat the PF. It's very difficult when you have more than one thing to treat.
Thanks again for your response!

Aimee T.

Re: Raynaud's syndrome

Aimee T. on 5/29/02 at 07:33 (085579)

Kathy and Wendy,

I may not have accurately submitted my responses to your response. I don't think they are displayed where I thought they should be. Please excuse my errors or the computers errors. I hope you both are able to read the responses. Thanks again.

Aimee T.

Re: Raynaud's syndrome

wendyn on 5/29/02 at 08:48 (085587)

Aimee - do you smoke?

Re: Raynaud's syndrome

Aimee T. on 5/29/02 at 09:21 (085589)

Wendy - no I don't smoke. Never have. I know this is not good for someone with Raynaud's.
Aimee T.

Re: Raynaud's syndrome

wendyn on 5/29/02 at 10:46 (085605)

That's good to hear aimee!

Someone told me once that Raynaud's occurs almost exclusively in smokers (I don't know if that's really the case or not).

My sister in law was a heavy smoker - the doctor told her that she absolutely must quit, and she has.

Re: Raynaud's syndrome

Kathy G on 5/29/02 at 12:51 (085617)

Hi Wendyn and Aimee and everyone else!

Well, I don't smoke either, never have. What I find really interesting in this discussion is that I have such sensitive feet that my podiatrist calls me his 'princess and the pea' patient! When he made my orthotics, he made them soft and got the type he would use for people who have arthritis because of the sensitivity of my feet. Never once did he or my family doctor mention that the Raynauds could be contributing to that sensitivity.

Before I had children and retired from the full-time workforce, I had lots of shoes because I just love shoes! No, I never wore high heels or pointed toes. I didn't wear the pointed toes because they hurt my feet and I didn't wear spike heels because I am a klutz and thought I looked like an idiot trying to walk in them. But even back then, the guys in the shoe stores would cringe when I came in because it would take such a long time to find a comfortable shoe for me! And if there was the slightest crease in the liner or any irregularity, I'd be able to feel it. They used to say that they could sell the shoes to someone else because the normal person wouldn't even feel what I was feeling. If I found a comfortable shoe, I would buy it in at least two colors because it was so hard to find shoes that I thought looked good and felt good, too. I wonder if that hypersensitivity was due to the Raynaud's?

The only time I have ever done a search online on Raynaud's I found very little information. Have either of you found a site that gives some comprehensive info? I do know that Raynaud's is supposed to be more common in people with Fibromyalgia.

Sorry I rambled but this is quite interesting to me. Thanks for any information!

Re: Raynaud's syndrome

Aimee T. on 5/29/02 at 14:25 (085627)

Hello Kathy and Wendy,

I don't yet know of any sites that are really helpful for Raynaud's. Most I have found are geared towards the hands.

I too love shoes but I only have two pairs I can wear at this time. My closet is full of shoe's I would love to wear. Maybe some day.

Kathy, what type of orthotics do you have? I have not been able to tolerate any. I keep re-injuring my feet. Tomorrow I may be getting
removable casts so that my feet will have time to heal.

The only thing I leave the house for now is usually doctor's appointments.
If I want to go to a store I need a wheelchair or a motorized scooter.

Anyways, I often have compared myself to the 'Princess and the Pea'. I remember someone giving me some handmade slippers long ago and I could not wear them because I could feel every piece of yarn. It was so uncomfortable.

Are either of you taking anything to help with the Raynaud's?

Thanks again - this has really helped!

Aimee T.

Re: Raynaud's syndrome

Kathy G on 5/30/02 at 08:43 (085749)

Aimee,

My orthotics were custom-made by my POD. He has one of those computer gizmos (now there's a technical term!) where you walk across a pad that's hooked up to a computer and he puts in the pertinent information and a pair of orthotics are created for you based on the computer printouts. It took me much longer than the average person to break them in. He had me wear them for ten minutes one day, 20 the next, and then stay at 30 minutes for, I think it was a week. Then I gradually increased the time from there.

I'm sorry that you can't get out and have to depend on motorized scooters or wheelchairs in the stores. It is a humbling experience to be in a wheelchair. Back in October, when I sprained my ankle, we had a trip planned for Florida and we went to Epcot but my husband had to wheel me around in a wheelchair. I'm glad that we went but I sure didn't like that feeling of helplessness! I recently got a permanent handicapped placard for my car; the other two were temporary, and it was not an easy thing to do. I only use it when my feet are really bad but it's a tough feeling to
admit that you've reached a point where you need it.

No, I don't take anything for the Raynaud's. I don't even know if there's anything you can take. As I say, mine isn't that bad and I've had it so long, it's just kind of a way of life.

Take care.

Re: Raynaud's syndrome

Janet C on 5/31/02 at 05:40 (085881)

Hi Aimee ~

I've been informed by my Drs. that I also suffer from Raynaud's Phenomenon, and it's just another symptom of the RSD/CRPS, which occurred as a result of failed PF and TT surgeries. I also have to use a wheelchair or motorized scooter whenever I go anywhere.

I used to have a closet full of shoes, but I gave them all away because I couldn't wear them anymore. So now I only have two pairs of slip-on shoes, but I can barely stand (no pun intended) to wear them! And I can no longer wear socks, my feet feel claustrophobic!

Heating pads work well to warm up cold tootsies, so does an electric blanket. And I take Calcium/Magnesium/Zinc supplements, which my Drs. told me will help with the muscle spasms and tremors.

I think one of the most promising treatments on the horizon is the use of the HBOT - HyperBaric Oxygen Treatment. It is known primarily as a chamber that they use on SCUBA divers, to prevent them from getting the bends. In short, it forces Oxygen into your Oxygen-starved extremities, and has had excellent results when used to treat a variety of diseases and illnesses. They have been using it successfully in Europe, and are beginning to have equal results here in the U.S; but it's VERY expensive, and most Insurance Co's won't cover it.

Best wishes Always ~ Janet

Re: Raynaud's syndrome

john h on 5/31/02 at 10:09 (085892)

Janet: you know they also make electric socks (battery) if you are so inclined.

Re: Raynaud's syndrome

Janet C on 5/31/02 at 11:01 (085902)

Battery Socks?!? :o\ With your quirky sense of humor, I'm not sure if you're pulling my leg or not, John! But, they sound plausible! Do they get toasty warm? Honestly, I can't comfortably wear socks anywore, because I don't like anything on my feet... or my legs, for that matter. Whether it's Raynaud's or RSD (I think the symptoms overlap), having anything touching my skin is painfully annoying.

But I thought of another recommendation for how to relieve the bitter cold of the extremities; it feels good to soak in a nice, long, hot bath. I just need to work on my jacuzzi room - (my oldest daughter was using it for storage of furniture for the past year) clean it out, and fill it back up with warm water, and I figure I'll start my own aqua-therapy at home!

With Warm Wishes ~ Janet

Re: Raynaud's syndrome

john h on 5/31/02 at 16:59 (085936)

Janet: no fooling, i see the heated socks in a lot of magazines and in particular camping or outdoor type magazines