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Raynaud's Association
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Topic Title: peripheral neuropathy
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Created On: 01/13/2007 12:56 AM
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 01/13/2007 12:56 AM
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Erin

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do you know, can raynauds ever cause peripheral neuropathy?  anyone here?
 01/13/2007 09:06 AM
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Sarah

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Hi Erin

Peripheral neuropathy is defined as a tingling sensation, followed by numbness and pain. Common symptoms of Raynaud's. The most common cause is diabetes. Controlling the blood sugar + pain relievers are the treatment.

Raynaud's produces peripheral neuropathy symptoms. That is why medicine is needed to control the Raynaud's attacks. I have never been told I have peripheral neuropathy. My medicines are controlling Raynaud's attacks so I don't get the peripheral neuropathy symptoms.

Is peripheral neuropathy something you are experiencing? Tell us more why you asked this question.

Sarah

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Secondary Raynaud's with a connective tissue disease
 01/13/2007 09:40 AM
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olebandit

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Erin,
Peripheal neuropathy can be brought on by a number of problems. Diabetes, as Sarah mentioned, seems to be the most common, but contributing factors can be Hepatitis C, vitamin B12 deficiancy, improper thyroid function, nerve damage and a few other factors.  Coeliac disease also can cause a vitamin B12 deficiancy resulting in symptoms of peripheral neuropathy.

My question is the same as Sarah's as I don't recall seeing posts on this subject on our forum before at least not from you.  What is prompting you to inquire about this problem?  Has a doctor suggested you add this to your list of health concerns?  Let us know what's up.

Robert

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I share information based on my years of experience with autoimmune disorders. Your doctor should be consulted when you are at risk for potentially serious problems. I am not a medical professional, just another patient with lots of experiences.

Edited: 01/14/2007 at 10:18 AM by olebandit
 01/14/2007 01:00 AM
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Erin

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yeah I guess I should explain. 

I posted a while ago about numbness I have now in three of my toes.  Well it's still here.  At times they are totally numb and I feel nothing in them.  Other times I can feel some pressure but like if I poke them or run my nail along them I dont feel it.  sometimes they tingle and really burn, but they are always somewhat numb, even when warm.  I talked to my doctor about it this week.  He said it sounded like I am getting some peripheral neuropathy from nerve damage caused by the raynauds.  my concerned is, does this happen very often with raynauds?  do any of you with severe raynuads have neuropathy?  I'm kinda thinking I'd like a second opinion as to whether or not this is raynauds.   

 01/14/2007 01:44 AM
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penny

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This may sound dimb but what is peripheral neuropathy, I am new at a lot of this I have found out more sence I joind the bords a few mouths back then I have in 8 years so excus me for asking so meny qustions

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I am some one who has it over most of my body and had it for about 20 years now BUT doing good becouse of all the help I got and here. and all of the best pepole in the wrold here that I met here Thank you all so much
Penny
 01/14/2007 01:57 PM
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olebandit

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Erin,

I have experienced symptoms of peripheral neuropathy in my left foot since the late 80s.  I had an awful Nueroma removed surgically in 1990.  It had caused lots of nerve damage, I could hardly walk on it. I was cut surgically from between my second and third toes to the mid instep to remove it.  My instep through the entire toe area of my foot sometimes has absolutely no feeling in it whatsoever, I mean that area is dead, but most of the time it is the intense tingling and very wierd sensations you describe.  I deal with this on a constant basis. The tingling sensations I experience are literally like needles in my foot. 

I have questioned my Rheumatologist about peripheral neuropathy in the past and as previously mentioned, I understand that this is likely due to the nerve damage in my case.  My Rheumy said the Neuroma and other symptoms I had at the time ( 1990 ), such as the Raynaud's smptoms I chose to ignore, the prescence of congenital scholiosis in my x-rays, etc., would have been an indicator to him of the possibility of autoimmune problems at that time and he would have began testing for my present conditions.  Might have saved me a lot of misery over the next ten years. 

I went through an orthopedic surgeon for the Neuroma surgery and he is a good doctor, just not a Rheumatologist or Neurologist.  He has also done two of my five knee operations and I respect his opinions and competency. The orthopedic surgeon said my problem was due to damage from my intense high impact racquetball competitions and it was classified as a sports injury. Of course he was not educated in autoimmune problems.  At this point in time, 17 years later, who knows who was correct???

I have done some reading on the subject since that time. I am not an authority by any means on this subject.  While I believe from what I have read that Raynaud's could at least contribute to peripheral neuropathy there are some other things that could be checked fairly easily like a vitamin B12 deficiancy, folic acid deficiancy, thyroid function and some others with the proper blood work.  My problem is almost surely from the nerve damage of nearly 20 years ago.  I have been checked for vitamin deficiancies and had blood work that would not indicate these or other conditions are problems for my condition. That does not indicate your results would be the same.

I would ask your doctor about the appropriate blood work to see if you have any of these other problems with deficiancies of one type or another, thyroid functions, etc., as that is probably the most simple process to begin with to eliminate some possibilities.  But I would follow up with this immediately. If you have already had the proper blood work done, then it is probably time to do something more extreme to help yourself. You know a lot of our problems are a process of elimination for the most part.  If you receive any hesitation from your doctor that this is an over-reaction of any type, I would likely hit the road.

Second opinions are great, I believe in getting them when called for.  I would definitely have the appropriate blood work done by someone and looking for a second opinion in your case seems to be something to be seriously considered with your symptoms.  If you have not received a diagnosis that you are comfortable with, one that makes sense with your experience,  then I would look for another doctor entirely for your treatment. I would not delay in proceeding forward.  I might also consider a Neurologist should it come to getting a second opinion where nerve damage is your main concern.  But you know best what your exact symptoms and conditions are, what type of threat they pose to your health, etc. You have to do what you believe is in your best interest.

Good luck and let us know what you find out.

Robert


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I share information based on my years of experience with autoimmune disorders. Your doctor should be consulted when you are at risk for potentially serious problems. I am not a medical professional, just another patient with lots of experiences.

Edited: 01/15/2007 at 10:57 AM by olebandit
 01/14/2007 03:45 PM
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olebandit

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Penny,
First of all, don't worry about stupid questions.  There aren't any when it relates to our diseases.  That is what we are here for.  We are always happy to do our best to answer questions as they relate to Raynaud's and autoimmune disorders and to provide our members with continued support.

Neuropathy is a disease that affects the nervous system in the peripheries, or areas of the body where the nerves end.  There are several types of Neuropathy and they are classified depending on how many locations the patient is experiencing symptoms in.  Diabetes is by far the most common cause of Neuropathy, but other conditions can cause it as well.

Understand that having some form of Neuropathy does not necessarily mean it will lead to a serious problem.  However, the cause of the Neuropathy needs to be determined and treated as the cause is usually more serious than the Neuropathy itself.  Treatment for these problems depend on the cause, but it usually includes opoid pain meds, meds that affect the nervous system such as antidepressants,
and anticonvulsive and similar medications such as Neurontin.  When Neuropathy occurs, it varies in severity, symptoms, and from person to person just like Raynaud's and other autoimmune disorders do. 

Peripheral Neuropathy occurs most frequently in diabetes patients. Following diabetes are those with immune system disorders, trauma, deficiancies with vitamin B12 and thyroid malfunction, and cancer patients.

Neuropathy often results in numbness, abnormal sensations that occur by itself or in reaction to external stimuli which is different than pain you might experience from stubbing your toe or hitting your finger with a hammer. The pain is often compared to a steady burning feeling, pins and needles sensations, and numbness.  The exact location of the pain is often very hard to pin-point.  The difference is due to the fact that "ordinary" pain stimulates only pain nerves, while neuropathy pain often results in both pain and non-pain sensory nerves in the same area, producing signals that the spinal cord and brain do not expect to receive at the same time .... thus causing confusion for the brain to diffuse.

I realize I have not answered your question in extreme detail.  This is kind of out of my league beyond what I have shared.  But when all else fails, remember that you can always go to www.webmd.com ,  Google, Yahoo or any one of the large search engines and type in the illness, medication, treatment or whatever you are trying to find information on.  I am seldom let down when I do a search on almost any subject.

Hope this helps some.

Robert



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I share information based on my years of experience with autoimmune disorders. Your doctor should be consulted when you are at risk for potentially serious problems. I am not a medical professional, just another patient with lots of experiences.
 01/14/2007 04:44 PM
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Sarah

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Erin

I do not like the fact that you are getting numb toes and you say they always feel numb. What is your doctor doing about it other than telling you it may be peripheral neuropathy? Did he put you on a medicine or order tests to investigate this?
 
I would not accept the answer that the Raynaud's is causing this numbness. I have never heard of Raynaud's causing a constant numbness.  With Raynaud's when the digits are warmed the feeling should return.

If my toes were numb I would want a better answer than what you were given. The underlying reason needs to be identified and treated.  Besides Neurontin there is a newer medicine called Lyrica that is being used also for peripheral neuropathy.
 
I definitely think you should seek a second opinion.
Sarah

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Secondary Raynaud's with a connective tissue disease
 01/14/2007 08:19 PM
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Erin

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thanks for your help Sarah and Robert.  It helps.  I do quite a bit of lab work every three months, including watching my thyroid, because of other meds I'm on.  So far things look ok there. But I'll talk to my doctor more about that.   My doctor said to try upping some of my meds.  I will try that, but I think I may go back in and put the pressure on that I need help finding an experianced doctor who can get to the bottom of this.  
 01/15/2007 12:43 AM
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olebandit

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Erin,

Finding the best medical advice available is always in your best interest.  If there is any doubt in your mind that your current doctor is not doing everything possible in your best interest you should be your own advocate and do what you know is the correct thing to do.  There are a lot of great doctors available.  Don't settle for anything but the best.  Simply "upping" your meds is not necessarily always the answer.

Good luck. Let us know how it goes with your search.

Robert

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I share information based on my years of experience with autoimmune disorders. Your doctor should be consulted when you are at risk for potentially serious problems. I am not a medical professional, just another patient with lots of experiences.

Edited: 01/15/2007 at 12:44 AM by olebandit
 01/15/2007 08:21 AM
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Sarah

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Erin

I remember how hard it was over a year ago to request my records from my Rheum of 20 years and seek another opinion. But that was the best thing I could have done. I hope that will be the same with you.

Sarah

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Secondary Raynaud's with a connective tissue disease
 01/15/2007 01:36 PM
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Erin

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yeah I dont have much faith at all that upping any meds will make any difference.  It hasn't in the past.  I know I need a doctor who can help me more than what help I'm am getting now.  The trick is finding that doctor! 
 02/09/2007 09:57 PM
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louie

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My mom is going through chemo and she got the neuropathy from that. I was wondering if it could be the reverse in her case.

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 02/10/2007 12:27 AM
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olebandit

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CindyLou,

Neuropathy can be a result of cancer treatment.  Go up a few posts on this topic and I give a detailed explanation of it.  Cancer is included in the diseases that can have an effect on this problem.  Of course, diabetes is the main disease in question. 

This is something where the appropriate doctor needs to consulted again.  Your everyday PCP is not going to usually have the answers you require.

Robert



-------------------------
I share information based on my years of experience with autoimmune disorders. Your doctor should be consulted when you are at risk for potentially serious problems. I am not a medical professional, just another patient with lots of experiences.
 02/10/2007 12:51 PM
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Ariel

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Hi Erin,  I just wanted to say that I've started experiencing this also  but my G.P puts it down to arthritis in the hip and knee. I have pain in my entire leg when I lie on my sides at night. In the day time my first 2 toes after the big one go from numb to burning to tingling. Also under my foot. I also have carpal tunnel in my hands and have to wear splints at night periodically.  I've wondered if it wasn't from raynauds also as I have many little blood vessels showing on the top of that foot that I don't have on the other foot. My Dr. gave me amytriptylene for it (I hate that stuff) and it does help with the pain but tends to build up in me and I end up a zombie. It's a miserable thing to have. I hope you find some relief soon.
Ariel
 02/10/2007 03:10 PM
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olebandit

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Ariel,

The process of getting your medications working in the best manner and with the least side effects can be a real pain.  It can take a while.  But don't let it get to you.

Keep up with all the side effects you are having and write your take on what is happening.  The more info you can give the Rheum the better chance you have of them making the proper med changes if you require it.  It may be you need to change the dosage or medication entirely if you are having side effects that can be eliminated by a simple change in your regimen.

Always watch your symptoms to everything.

Robert

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I share information based on my years of experience with autoimmune disorders. Your doctor should be consulted when you are at risk for potentially serious problems. I am not a medical professional, just another patient with lots of experiences.
 02/10/2007 05:06 PM
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Erin

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Hi Ariel,

It is the middle three toes that are numb all the time....and burn or tingle at times.  Similar to yours sounds like. 

How much amytriptylene are you on?  I'm on it too, but only 10mg.  what time of day do you take it?  I've found the best time for me to take it is at dinner time.   taking it then helps me fall asleep at night.  you may be on way more than me, but I wonder if you took it late in the day if it would help you feel like less of a zombie?
 02/10/2007 09:44 PM
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Ariel

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Hi Erin,  I'm on 10 mgs. as well. I usually take it at about 8 pm. I tried taking it earlier but was falling asleep before bed. I have a hard time waking up in the morning with it, I don't know if that's because of the fibro I have which makes me sensitive to the effects of meds or not. After a week or so of taking it I have to stop for awhile because I end up dreaming all the time, even a strange feeling of dreaming during the day. Really, really weird. It also makes me very hungry. Do you get that effect? 
 My toes do sound just like yours.
Poor Robert,  You have had a heck of a time over the years with yours it sounds like. What test did they do to discover the neuroma? I wondered about that with mine as it feels worse between the 2 toes and sort of swollen. I also have developed a sore lump on the instep of the other foot. I feel like I'm just falling apart. lol
I'm going to approach my Dr. with these new things I've learned next month when I go for my yearly medical. He isn't too open to new things. Once I asked about a drug I'd heard about for migraines and he told me he didn't have any experience with it and didn't feel comfortable prescribing it for me.End of disscusion.  Sounds like he has a repitoir of drugs that he prescribes and doesn't vary from it much.
Ariel
 02/11/2007 08:00 PM
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Erin

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hi Ariel,

sounds like you are pretty sensative to meds.  I agree, this is likely because of your fibro.  The biggest reason I am on amytriptylene is because I have a lot of trouble sleeping, so having it make me fall asleep is the goal....for me.  I do remember it took me a little while to get used to though.  the first night I took it I slept til 3 in the afternoon!  My family thought it was funny!  I was embarressed!  I don't have trouble with it now.  my Rx is actually for 20mg a day and that kinda upsets my stomach so I stay with 10.  I wonder if you'd do better on a half a pill?  I've split mine before, sometimes I take a pill and a half. 
I guess I'm not sure if it makes me more hungry.  I've been on it for years now.  i like to eat, but that may just be ME...not the med.   It hasn't affected my weight at all.
 02/16/2007 04:35 PM
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suewatters1

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Hello I am a newbie I was just diagnosed with Raynauds by my family DR. I had Raynauds symptoms for many many years. Cold hands/and cold feet but since spring 2006 I have been getting more then that it's hands fingers joints aches. In 2004 I got CIDP which is a peripheral neuropathy disease. Called Chronic Inflammatory Demyelinating Polyneuropathy. It's not getting worse but I had a nerve biopsy in June 2005 and it still hurts to this day. The 2 days before my hands started to really hurt my ankle where I had the biopsy really hurted more. Is it a coinsidence? I take Lyrica for my Nerve pain for my ankle; not sure if it would help my hands because that would be 2 separate things right? I am glad to see this forum I am hoping to learn lots from this place to tell my Family Dr about. Sue

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suewatters1 with Raynaud's and CIDP and ADHD and hearing loss in left ear. Tested positive for the HLA-B27 gene.
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