hello

[Kristin]

I am hoping to find at least one fellow sufferer to chat to. is there
anyone out there? just had another day of feeling like the victim of a
very proficient voodoo doll user with a grudge against me! :)

[mcinto...@gmail.com]

I'm here, Kristin -- nearly 6 years later. I hope there's still someone here to discuss this as I'm thinking it's what I have too!  

Am waiting to hear back from my neurologist to see if he agrees.

~ Patty

[pjsweet...@gmail.com]

Hello there My name is Pat and I saw another Neurologist yesterday.  I've been suffering from this WMSN for 20 years.  Of Course until yesterday I never knew what it was, if it really is WMSN.  Over the years I have been to 4 Neurologist, had 4 MRIs, gone to Doctor after Doctor, Had allergy tests, Gone to Natural Doctors, Counseling, Psychologists, tried different diets.  You name it I've tried it.  The first onset was 38 and my butt started burning like I was sitting on fire, I thought it was from sitting on the carpet in a house I rented.  Then it went to my legs, feet and hands. It lasted 4 years and the pain was incredible.  I'd been called crazy, hypochondriac, faker, Oh you just say this for drugs. etc. There is no rash, I do turn a bit red, but I am really light skinned anyway.  After the 4 years, it went away one day and has come and gone over the past 16 years.  Some flares are so painful I just want to scream. Sometimes it's tolerable.   Lately I have had another big time flare. wow.  I feel on fire on my legs, feet, hands and face.  It moves around my body.  I've had to resorted to antidepressants.  Also Valium seems to help and I only use that when the flare is intolerable.   Exercise actually helps me.  I don't have weakness in my muscles, thank God, just numbness in my feet and burning.  To be honest I don't want to live like this anymore.  I'm so tired of the burning.  In summer it's worse, but in summer I don't have to put clothes on my legs and arms.  In Winter, in Montana, I have to wear warm clothes.  I only wear 100% Cotton, it breaths and is not as bad as other fabrics. There are days that I actually sit on ice at home and at work.  Does this sound like what you are feeling?  Please let me know, maybe it's not WMSN, but it sure sounds like it... Thanks for listening.

Pat

[Kristin]

Hi Pat,

My full sympathies! I was luck and got diagnosed quickly, but know most have been much longer like yourself. I have noticed an increase in diagnoses since writing the wikipedia page, but still extremely few, as you can see from the posts here. I leave it to be moderated so I know when someone writes something.

Getting a diagnosis is the start, but now you need to work out your limit. Mine is that I can walk more than 20 feet without pain, sometimes a lot less, but with a mobility scooter and other lifestyle changes, I now have little pain most of the day. Nerve pain that is, I get other pain too! But yes, I nearly went mad with pain at the start. The nerves can be calmed when you find what works for you. Me I found acupuncture helps to calm persistent nerves, and a mix of meds takes the edges off so that the nerve spikes aren't so bad.

Yes, heat is a nightmare - where do you live. Welcome to take this to email if you don't want to post publicly? I live in England in a very cool house which helps a lot!

You arent alone, you arent mad, and you can get better, not cured, but better!

Kristin x

[Jenny]

I am so relieved to finally find this site and really hope that we can get it active and that others find it too as it has taken much research to find help.... fingers crossed!

I have suffered from this dreadful for 7 years now but been diagnosed with WMSN since around 2014. 

I started feeling excruciating pain and burning in hands which spread to feet, legs, which then made the nerves burn out and leave no feeling in parts of hands, feet, legs then more recently cheek. I have had completely debilitating chronic pain which has left me unable to move or be touched as skin very hypersensitive. Comes in waves of relapse and no particular reason although getting any illness like a cold definitely makes it worse and chronic. I can be completely house bound or get short periods of respite; either way the times when I get respite have decreased significantly in recent times. I have had lots of painful or not painful jolting which I cannot explain but do take over my body. 

I find the hardest part is the ignorance I am surround by as if I had MS then people would automatically empathise and know how to manage my condition; instead I get lots of tests for the 'just in case I have missed anything' and prescriptions for medication that makes me feel sleepy and out of it. 

I would be grateful to hear from you if any therapy or pain relief has worked for you and in particular any recent research or papers that are worth linking to (so little out there). 

I am also keen to know of a specialist who could provide more specific information from neurologists who have not seen many people with this condition.

I have attached a really useful paper (where I found reference to this site) which provides information on fellow sufferers. 

Many thanks for you help in anticipation. 

To say it

[Patty McIntosh-Mize]

Switch to the Wahls Protocol.  It will change your life.

https://www.amazon.com/Wahls-Protocol-Autoimmune-Conditions-Principles/dp/1583335544

Good luck!

- Patty

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[Kristin]

On Thursday, 12 January 2017 15:26:43 UTC, Jenny wrote:
> I am so relieved to finally find this site and really hope that we can get it active and that others find it too as it has taken much research to find help.... fingers crossed!
>
>
> I have suffered from this dreadful for 7 years now but been diagnosed with WMSN since around 2014. 
>
>
> I started feeling excruciating pain and burning in hands which spread to feet, legs, which then made the nerves burn out and leave no feeling in parts of hands, feet, legs then more recently cheek. I have had completely debilitating chronic pain which has left me unable to move or be touched as skin very hypersensitive. Comes in waves of relapse and no particular reason although getting any illness like a cold definitely makes it worse and chronic. I can be completely house bound or get short periods of respite; either way the times when I get respite have decreased significantly in recent times. I have had lots of painful or not painful jolting which I cannot explain but do take over my body. 
>
>
> I find the hardest part is the ignorance I am surround by as if I had MS then people would automatically empathise and know how to manage my condition; instead I get lots of tests for the 'just in case I have missed anything' and prescriptions for medication that makes me feel sleepy and out of it. 
>
>
> I would be grateful to hear from you if any therapy or pain relief has worked for you and in particular any recent research or papers that are worth linking to (so little out there). 
> I am also keen to know of a specialist who could provide more specific information from neurologists who have not seen many people with this condition.
>
>
> I have attached a really useful paper (where I found reference to this site) which provides information on fellow sufferers. 
>
>
> Many thanks for you help in anticipation. 

Hi Jenny,

I find tens very helpful. This is because I have fibromyalgia as a codisorder. I find that keeping my other things under control keeps the neuropathy much more manageable. You also need to know that the pain as a result from doing something can be like post exertion malaise in that it can take up to 72 hours to kick in. This means you can do a lot one day, feel fine the next so do more, and then build up trouble for when it does kick in and not realise the cause!

I do find that doing less hurts more, but you do need to move a bit. I have recently managed to retire early with full pension on grounds of ill health, so now on bad days like today can pretty must just curl up woth the dogs and knitting. Stress also makes it worse, but its hard to stop worrying when you hurt!

I tell people (legitimately) that what I have is like the early stages of MS, but that my nerves heal so can start the process all over again. This is what they mean by benign - what hurts you does not necessarily kill you!!

Acupuncture has also been very helpful for a flare up. The size of an excruciating patch shrinks massively overnight after a treatment for me. However acupuncture only works for 70% of people, and not all forms work for the same people, so you may need to shop round, but its worth giving it a go. I literally draw round the painful bits so my acupuncturist knows exactly what to treat. Shes nuts but brilliant 😊

I find a mix of amitryptiline and citalopram help me sleep and recuperate, but I have to take 1.5 tablets of citalopram as 10mg wasnt enough, and 20 meant I was sleeping my life away.

My surname is warry if you want ot look me up on facebook, and Im the only one of that name.

Or just post here. Were not common, but there are some of us about, and its increasing since I wrote the wikipedia page following my research thankfully.

Kristin x

[Somerset]

Thank you so very much for your email, I cannot tell you how great it is to hear from a real person! How many people are part of your group, are they all sufferers or carers?

Your research has been a lifesaver via the Wiki; there is so little out there; I find that is very little recent research. I am keen to find a neurologist with experience of this condition. My Neurologist is lovely but openly admits to know nothing about the condition (!), which with the best will in the world is hard to remain positive when meeting up with him. He is due to see me at the end of the month so it would be good to have something to tell him about where he might go for advise or provide him with some recent research.....any ideas? 

I am at home most of the time now as having back to back episodes of relapse, but am trying to make the most of respite days or hours when they come, however like you say it then always catches up with you ,,,,but at least you can grab them whilst they are there. 

Are you able to pinpoint when you started your condition, for me it was a very badly placed epidural which resulted in a dural puncture; the symptoms started with the classic tingling and then soon went to burning pain, jolts of chronic pain, numbness etc which then progressed to how I am today. I am told that the initial assault on the body triggered the autoimmune to kick in. Do you know of anyone else with a similar situation? 

I am afraid I don't do facebook (although I do threaten my children I will do one day soon!) so if you are happy to communicate via email that would be great for me. 

Many thanks XXX

[Kristin]

Hi I'm afraid this is about it for people on the group. Its very rare, and no one knows how to cure it, its just a name for a bunch of symptoms. I have even seen a professor of neurology at oxford university hospital! Tell your neurologist to look at it like diabetic neuropathy all over not just the feet, and treat it symptomatically. Some drugs work for some, some others dont tolerate them. It is possible to go most days without too much pain once its under control. Just dont build up pain by pushing through it day after day causing flare ups, avoid extremes of temperature, uncomfortable clothes and shoes, non breathable fabrics, repetative actions etc.

Mine was kicked off by a bad reaction to mosquito bites, then exacerbated by a period of stress causing fibromyalgia as a codisorder. Everyone seem to have some sort of trigger.

Keeping this open for the group, but will email you my medications and those that didnt work for consideration by your neurologist

Take care x

[theinn...@gmail.com]

Is this group still active? I was diagnosed in 2017 and looking for recommendations to manage this.

[Kristin]

Hi,

It is active, or would be if people messaged more. But I put the moderation on so Id know if ever anyone did contact it. I suggest you take a look a diseasemaps.org theres a few people on there, and I’ve at least answered all the questions etc. What have you tried so far? Mostly for me its pacing, and acupuncture that help, alongside the copious drugs etc! Tens machines can help too, as does capsaicin cream, all of which confuse the nerves, blocking the pain signals.

Kristin

[ruthej...@gmail.com]

Hi

Just recently found this group! I was told by a neurologist last month that i have Wartenbergs. Like all of you i‘m glad i can put a name to it! I Wish there was more info out there! Is there a facebook group for WMSN?

[Kristin]

Hi,

Yes, there was a Wikipedia page that I wrote but the wikinazis deleted it after 10 years because I did put the properly accredited refereces in inverted commas despite that being a new rule!!

There was a facebook group, but the woman running it was rather scary! Perhaps Ill start a new one at last. Its been long enough I think.... look me up, my surname is warry, and Im the only one ;)

[ruthej...@gmail.com]

Brilliant! I’ll look you up! 👍🏻