Raynauds in Soles of feet?

As many of you could tell in my previous post I am searching for answers on whether I am experiencing Raynauds or not.
One of the problems is that my issue is much, much worse for my feet than my hands and its much more of a problem with my soles than my toes.
The majority of pain and discomfort I have is in my soles and not my toes, although my toes do experience pain from time to time.
For those of you with Raynauds in your feet-is it your toes or your soles that are most affected?
The pain on my soles can be almost unbearable. Still no obvious color changes except for some deep red at times.
I do notice there are times when my soles/entire bottom of foot can look yellow (sometimes when very cold), but once again I compare to my husband and his soles can look yellow at times too. And there are times when my soles look yellow and they aren’t cold…so this isnt quite helpful to me.
I have yet to experience any obvious white or purple/blue/black color that the many doctors I have been too keep telling me about. They continue to tell me that I will know the color change when I see it as it is very obvious.
So far just great pain/cold intolerance that is mainly in soles of feet.
I just saw my 3rd Primary Care Physician last week (total of 12 doctors so far) and she is wondering if perhaps I suffered some sort of nerve injury (those 2 weeks of intense pain that felt like my nerves were being stripped) and is hoping that it will burn itself out in time. Sounds good to me, but right now I just dont know what to think.
Any input about your feet experiences would be most helpful.

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I with your doctor sounds more like a nerve problem. I nerve pain in my feet felt mostly under my heels. I have bone spurs and chronic plantar fascitis in my heels. When I am having raynaud problems its always felt in my toes and fingers. You may want to see a podiatrist for futher evaulation.

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Unfortunately, with sclero, the foot padding "thins" and leaves the bottom of the feet with little to no padding. Without that cushion AND lack of adequate circulation, everday walking can become painful. I see a podiatrist regularly and always wear supportive/cushioned footwear.

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Tammylou: I also have the same symptoms in the soles of my feet....my doctor said it's from Raynauds and makes walking painful.....I usually experience this during the winter.....now I've got a new symptom....it feels as if my Achilles tendon is pulling away from my heel and is stiff and makes it hard to walk....

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As Katsherman states Sclero does effect the bottom of the feet. Dr.'s kept trying to tell me that the pain I had was from planter fascitis, it wasn't until my Rheumy examined my feet and became concerned with my sensation/feeling in the bottom of the feet. He suggested I see a neurologist...he was right on target. It was determined that I have pleuropahal neuropathy and since I have Sjournes also, it was decided to do a Surel Nerve Biopsy to see if the origin of the neuropathy could be found. I can tell you during the entire time the pain was almost unbearable.

Even though I was placed on neurotin for the neuropathy, I still experience pain. The Sclero is in my feet - Toes and upper part of the top part of the foot.

I hope this little information about my painful feet helps you in your search for a Pain Free
day.

As I sit here I'm getting the "stabbing" pain in my toes, my dr. says this is part of a nerve dying

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I have the same issue, but just my toes. They turn purple and it feels like pins & needles If I don't warm them up right away. Good Luck & GOD Bless.

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I can relate as I have been having pain on the bottom of my feet so intense lately that its keeping me off my feet. Hard to get on with life while sitting or laying down!
My rheumy said I should not walk barefoot unless on a padded surface, carpet etc. I'm not sure what I can do other than that. My feet hurt after standing or walking in shoes too now. Not sure how to stop it. I have raynaud's and sjogren's.

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Thank you everyone for your responses. I keep telling my family and friends to never take their hands and feet for granted. Never thought they would be such a source of aggravation and pain as they are now. Yikee!

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Dr. Chattergee at the Cleveland Clinic also told me that soles of my feet had thinned out. I get raynauds in my toes severly in the winter with actual holes in the big and 2nd toe. Come summer when they can breathe, they clear up almost completely.
I need to move to a warmer climate that is warm year round. Hopefully coming when my last daughter graduates from high-school!!!

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Raynaud's causes the toes and fingers to go white in patches. Even the whole hand and feet can have the same effect. Like there's no blood in those areas. Mine looks funny and all weird when that happens. Scared the hell of me the first time that happened! The whole hand and feet feels like a block of ice without any feelings. Hope this helps.

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I have had raynaud's for 20 years...it not only effects your feet and hands, it also effects your nose and your ears. The one thing that has helped me with my feet was after having chemo for lung cancer I was put on neurotin for neuropathy, I take the lowest dose at bedtime. Also my rhemy upped my procardia xl and that has helped alot with the raynauds.I have CREST and Sjorgens. Just find a Dr. you are comfortable with, I suggest a rhemy and stick with that one, you will learn together what works for you. Hope you can get relief soon. Everything everyone suggested was great.
Rose

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I have had raynauds for the past 17 yrs. Over time I have learned how to keep my hands and feet warm. This is not easy, Indiana winters are quite challenging, even the air condition in the summer months present a challenge. As much as I try there are times when I just can't stop the raynauds flair-ups once my hands and feet are chilled. I do not have the thinning cushion on the soles of my feet (thank God) at least not yet. I do get small sores on my fingers and toes that are painful. I always have gloves and socks close just incase I need them.

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I have been using Traditional Chinese Medicine along side the western medicine and I believe that it has helped me with the Raynaud's problem. The TCM treats it as a problem caused by poor circulation and weak heart. Basically if anyone is able to have access to a chinese traditional doctor, I suggest consulting him/her as oppose to taking all the various med with all the side effects. My goal is to cure my scleroderma problem without anymore western medication.

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I have limited systemic scleroderma. I now have Raynaud's in my feet, but not yet in my hands. But about 5 years before the triphasic color changes started, I noticed that when I took a warm shower the soles and tips of the toes would get cherry red. They still do, but now I also have the triphasic Raynaud's if my feet get chilly. About a year and a half ago the red palms started, so I figure in about 3 or 4 years from now my hands will start getting the triphasic color changes of Raynaud's also. The red attacks preceded the development of Raynaud's by about 5 years. Now the feet and hands both hurt and burn, especially when they are red. And that can happen at any time, but seems to be particularly troublesome in occuring between 2 and 4 AM.

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Thank you for your information DaisyDo.
I was wondering how long you were getting the red color in your feet before you felt any pain and how long from the actual Raynauds showing up did you get any other scleroderma symptoms?
Do your feet hurt all day long and turn red in the shower on a daily basis?

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Actually my first autoimmune symptoms showed up in 1985, when in two months into pregnancy my feet swelled, toes went numb (for at least a year an a half!), fingers swelled (abruptly and permanently), and I developed what looked like tiny red pimples on my cheekbones like no other acne I had had previously. The GYN asked me if I'd ever been tested for Lupus. I said no, but she didn't bother to test me, and years later when I asked for her records, it turns out she hadn't even recorded these events. My friends recall it all, though.

My next flare was in 1997, when 14 days after a flu shot I developed a shoulder rotator cuff problem that simply wouldn't go away. So finally 3 months later I went for the first time to a rheumatologist. He ran an ANA which turned out to be 1280, with speckled pattern. He said I was a lupus suspect, and he referred me to another doctor who was a dermatologist with a special interest in lupus. That doc re-ran the ANA, finding it to be 2560. His opinion was that I had rosacea instead of Lupus.

So I went back to the first doc, who put a steroid shot into my shoulder. That resolved that episode, but during the summer some elbow tendonitis was evident. By fall, everything had quieted down, when my internist insisted on giving me another flu shot. Bingo, 14 days later, I had rotator cuff syndrome again, and after 3 months of this, I was back again at the rheumatologist getting another steroid shot.

Well, the rheumatologist monitored me for several years. The ANA when done by Quest was pretty much always speckled, and highly positive.

Then in 2002 everything flared up really horrendously. My fingers swelled abruptly and permanently again, requiring a third and still larger wedding ring. My shoulder became so acutely painful, I could not move it, and an orthopedic specialist diagnosed it as a "frozen shoulder". I had episodes of hip weakness which made it difficult to rise out of low chairs. My hands were weak, The other shoulder begain having problems. A nuclear scan reported that my shoulders, hands and feet were "degenerating." My feet, which had always been painful after my pregnancy, became much more painful, and the same quality of pain started in my hands. The shins became exceedingly tender to touch. When the pain and parasthesias started climbing into my lower legs and forearms, I realized that my prior foot pain had been the beginnings of this whole process. That winter I also started having trouble sleeping. Every place that rested on the mattress was a painful pressure point. I hurt all over. I started losing the hair on my arms and legs. What hair is left on my arms is almost microscopic hair shafts. The few hairs left on my shins are mostly ingrown.

The doc kept doing the same antibody tests over and over. Usually it was speckled, but once the ANA was antinuleolar, and once it was highly anticentromere B. The SCL-70 was negative though, and I could not convince the doc to follow up the anticentromere staining pattern with an actual anticentromere B test. Then the doc left for a new position at the Cleveland Clinic.

To make a long story as short as possible, In the ensuing years various doctors diagnosed GERD; severe obstructive sleep apnea with a narrowed opening into the back of my throat; inflamed spine, liver and thyroid; a different dermatologist diagnosed telangiectasias (rosacea can cause telangiectasions, but so can scleroderma!); 5 herniated discs, thyroiditis with hypothyroidism (treatment did not bring back my hair), spontaneous fusion of my cervical vertebrae; alternating constipation with fecal impactions, and diarrhea; HLA DQ8 type (can be associated with scleroderma and other autoimmune diseases); foot Raynauds.

When my neurologist witnessed my first attack of foot Raynaud's in his office, I decided the time was ripe to discuss it all with him, and ask for an anticentromere B test. He ordered it and it was highly positive.

I went to Dr. Fred Wigley, scleroderma specialist at Hopkins. He ran the anticentromere B test again and it was now off-the-chart positive: >8.0 where the normal is 0.0 to 0.9 . He also ordered an echocardiogram which revealed a stiffening of the heart muscle: left ventricular diastolic dysfunction, grade 2.

He diagnosed me with "Undifferentiated Connective tissue disease with features of scleroderma."

I went to an ophthalmomogist and mentioned dry eyes. He did a slit lamp exam which showed decreased tear meniscus. Then he did a Schirmer's tear test which showed my tear volume is about 1/3 the normal minimum. He suggested possible Sjogren's syndrome.

I noticed that the skin between my cuticles and first knuckles has gotten really shiny, and sometimes the areas around the cuticles get red and slightly swollen. Every now and then a cuticle will decide to stick straight up. Once one of my cuticles started oozing a droplet of blood. This kept up for a couple weeks, until I put neosporin ointment on it to help it heal. Another time I developed a small ulcer on one finger. Again, I whipped out the neosporin and it healed.

I went to a cardiologist about the heart problem. He ran a metabolic stress test and said the VO2 Max was about 50% of what it should be for my age and sex. He ordered a lot of other tests to rule out possible causes of cardiomyopathy, and in the end indicated that it was probably due to scleroderma, but that there would be no way of proving it. He also said that there were some indications of exercise induced pulmonary arterial hypertension.

I went to Dr. Virginia Steen (2nd scleroderma specialist) for an opinion about the possible PAH and heart trouble. She looked at my nailfolds and said they definitely have the capillary changes typical to scleroderma. She diagnosed definite limited systemic scleroderma, but said that other than what I am already taking, no other treatment (no immunosuppression) is yet advised.

So that's where I'm at now. It took me from 1985 to 2010 to get diagnosis, and I am still not getting treatment. My father had all this going on and he never did get diagnosed. He died of his heart problem. His mother had chronically painful feet and the purse-string mouth, with the radial fissures all around it, so commonly pictured for CREST or limited scleroderma. This is definitely hereditary. I think the reason it took so long to be diagnosed is that I have no skin hardening. Dad didn't get it either. I still am not clear as to why I am diagnosed with limited scleroderma, rather than sine scleroderma, unless the finger swelling and shininess between nail and first knuckle qualifies as beginning sclerodactyly. I still have no calcinosis that I can identify as such, just calcified heel and elbow tendons, and oseophytes in places adjacent to my spine.

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Oh my goodness DaisyDo, that is an amazing story!
I am always amazed at how different everyones story is and yet with simiiarities as well.
Thank you for sharing this with me. All the information I gather helps me to understand scleroderma a little bit more.
I'm still not sure if I have it. All my doctors (13 or so) so far continue to say no, but I find so much contradiction to what they say that I lose a little faith in them. And when I see how long the process for diagnosis is for so many people I'm just amazed. I feel like a bit of a time bomb with the doctors waiting for something really big to happen before they can diagnose me instead of simply shaking their heads at me and saying they dont know whats wrong. It can be discouraging. But talking to people going through the same process helps.

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Yes, it does help. And to answer your other question, I do get the red burning palms and hands every time I take a warm shower. The only way I can avoid it is to take a shower where the water is just barely above room temperature, and that's a bit too chilly for me. I also get the red palms and soles, as I said, at about 2-4 AM, and at various other times, especially if I am warm. Warmth seems to trigger it. Dr. Wigley said he thinks it is erythromelalgia. So I went and did an image search for that, and yes, it looked like a photo I had taken of my feet during a red attack. So I did some reading on it. It can co-exist with neuropathy (which I have), and various autoimmune diseases, including scleroderma, and is also aggravated by insomnia (which I also have.) Some say that Magnesium helps, so I started making sure I get Magnesium with both my Citracal, and in my vitamin tablet. Since I started that, I don't think the red attacks have been as frequent, at least in the daytime. Dr. Wigley said to keep my feet cool but not cold, so for the summertime, I went out and bought a couple of pairs of sandals.

It's really awful to have both Raynaud's and erythromelalgia. It means I have not one but two temperature triggers. Anything below 74 F. degrees can trigger a Raynaud's attack. Anything above 78 F. degrees will trigger a red attack. So I have just a 4 degree zone where I have neither. It's the pits! I wish we had longer springs and autumns here where I live.

By the way, if you don't know how to do an image search in Google, here's how. Just do a regular search, for say "Erythromelalgia" and when you get your "hits" list then look in the upper left corner of the window. There you will see "Web," "Images" etc. Click on "Images." When you want to switch back to regular browsing, click on "Web." The pictures that look most like my palms and soles during an attack are at: http://www.erythromelalgia.org/WhatisEM.aspx
Frequently just the palms and soles are involved, but sometimes larger areas can be involved, as you'll see.

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Tamy Lou -

Coincidentally, today I've been dealing with the feet soles, usually just one at a time and today it happens to be the left foot. Here are my symptoms: It is definitely painful to walk on. And it feels as though I am walking on thickened pads inside my soles. So I am not certain this is the thinning and loss of pad that happens with Reynaud's. Reason being, after the flare leaves (usually a couple of days) my feet go back to normal, and even walking barefoot feels normal. Finally, during the flare, there is inflammation and some itching.

Having mentioned that, I should say, my hands and digits will randomly go through a similar experience, however no distinctive color changes per Reynaud's. I think salicylates (aspirin, Natto-K, etc) are my triggers, because when I abstain the flares subside for weeks at a time.

Anyway, wanted to see if this is your delim as well.

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RickinCA and TamyLou,

What I have going on in my feet definitely has nothing to do with salicylates. You see, I don't take aspirin at all because I am allergic to it. And I am not talking about stomach irritation; I mean true allergy. When I take aspirin I get postnasal drip so bad that within a few days I am coughing and have a sore throat from it. Rhinitis is the PDR-listed aspirin allergy.

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RickinCa,
I have exactly what you are describing with my left foot. It feels like it is 5 pounds heavier right now with a lot of thickness on the bottom. It itches so bad I dare not start scratching. Last time it flared I scratched and couldn't stop and it got infected. Is your foot shiny on the bottom?
The hope is that I know it will go away with rest. that seems to be my only good medicine to avoid and or minimize all the different Sclero flares. Best wishes to you.
Tina

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