Worsening Symptoms

Support
1

More symptoms.

It has been a week of one step forward and many many steps back. The weather has continued to be hot. I am going to have to sell my soul to pay the power bill but I have had to put the Air Con. on today. Thursday last week was 37deg C. Autumn weather cannot come too soon but the sub-tropics does not have a winter like where I came from in NSW. I would rather have the inconvenience of wearing extra clothes and gloves for Raynauds than this debilitating, life sucking burning pain of EM Now it seems it has reached my knees and thighs. Last night the heat generated up from my feet, which hang out and under a fan, but trying to get to sleep was nigh on impossible with this extra burning sensation. Where will it stop. I have an appointment tomorrow and I am not all that confident that he will have any answers or will even put a name to it. Printed off info for him but I am only one of his many patients - but if anyone knows of Doctors here in Australia who know about EM, I would be most grateful to hear from you., Desperation takes on a whole new meaning. Hanging in and have made a couple of friends from Members List that live down under.

2

Hotmary.

Sorry to hear that your EM has gotten so much worse and appears to be spreading. That can be really scary, I know. Here are a few thoughts:

  • I think Mads has put together a list of doctors in various locations-- have you checked that discussion?
  • Another option might be to contact the Erthromelalgia Association as they are updating their list, too.
  • Dr. Davis at the Mayo Clinic in Minnesota is a lovely man--he's the big guru there who has been using the amytryptiline and ketamine cream. Perhaps the Mayo has a list of physicians with knowledge of this disease in other countries--I'm sure they would have connections as they are a teaching center.
  • Contact the Aussie's who belong to this online support group--Tizzie was one person I remember and I know there are others.

I hope your increased flares are temporary and you have some relief soon. May also be a time to look for other medications to provide some help.

Dragica

3

I’m so sorry hot mary. It can be very worrisome when things get worse. I hope it is just the extra hour temps and will shrink back down to just your feet when it is a bit cooler. Of course I hippie it just goes away completely too!
I agree with you 100% I would much rather have the cold/ RAYNAUDS. Dragica told you all the info and more that I had for finding a doctor. Who knows maybe worth the info you being in your current doctor may be able to help you.
It is winter here in Washington state US but I too have had to crank on myAC today. I guess it might be first day of spring??? Any how this has been the warmest winter in over 40 years so I am a bit nervous about what’s to come. I guess I should try not to worry because it won’t change anything other than making my symptoms worse from worry.
I don’t know if this is anything you are able to do but we had to get extra large tubing/ducts for our AC to allow it to keep things cooler than normal people required it helps greatly! I can keep it around 60 degrees inside up to about 75 out side and around 65 degrees in temps in the 80’s low 90’s.
it also helps to just use microwave for cooking unless you have someone that can help by cooking on the BBQ outside for you. You can then just reward when needed what ever someone was so nice to cook for you or side. Slow cooker s also help with not adding extra heat to your already hot house .
I how you feel a little better soon.
Hang in there.

4

Hi Dragica. Thanks for your response. It always nice to know there is somebody at the other end of a Post. I have not joined that discussion by Mads to obtain a list of Drs. in Australia but I have reached out to those living down under to be friends Only one has responded so I still need the info to take a step forward.

My Dr's appointment yesterday was not all I wished it to be. He continued to tell me he does not know and that it really was unlikely that I had EM because his thinking was it is so rare and therefore rare that it would be so!!!! I do not want this condition but I do have the symptoms and I do want answers. He took me off the Aspirin and increased my dose of Lyrica from 25mg a day to 100mg - that is one huge jump. 50 in the morning and 50 at night. This from a Dr, who told me he did not like prescribing this drug because of the side effects which are numerous and not nice. I have read where others saw a remarkable difference in their symptoms on this drug - initially - and then it was back to square one. I feel I am on a roundabout and that I shall be on it for some time to come. He has referred me to a specialist for Thermal Image Testing - can anyone tell me if this is a productive step please? His words are that he can only do what he can do as he has never heard of EM. I did give him all the info that I had printed out but my feeling was that he would not read it. Still very hot here and unpleasant so continue to be house bound with the same issues and it appears to be worsening but truly giving my all to staying positive and calm . Keep on hanging on.

5



Alina Delp said:

I'm so sorry hot mary. It can be very worrisome when things get worse. I hope it is just the extra hour temps and will shrink back down to just your feet when it is a bit cooler. Of course I hippie it just goes away completely too!
I agree with you 100% I would much rather have the cold/ RAYNAUDS. Dragica told you all the info and more that I had for finding a doctor. Who knows maybe worth the info you being in your current doctor may be able to help you.
It is winter here in Washington state US but I too have had to crank on myAC today. I guess it might be first day of spring??? Any how this has been the warmest winter in over 40 years so I am a bit nervous about what's to come. I guess I should try not to worry because it won't change anything other than making my symptoms worse from worry.
I don't know if this is anything you are able to do but we had to get extra large tubing/ducts for our AC to allow it to keep things cooler than normal people required it helps greatly! I can keep it around 60 degrees inside up to about 75 out side and around 65 degrees in temps in the 80's low 90's.
it also helps to just use microwave for cooking unless you have someone that can help by cooking on the BBQ outside for you. You can then just reward when needed what ever someone was so nice to cook for you or side. Slow cooker s also help with not adding extra heat to your already hot house .
I how you feel a little better soon.
Hang in there.
6

Hi HotMary,

Sounds like we have a lot in common. I also deal with Raynaud's daily in a sub tropical climate with gloves and boots indoors, and my EM symptoms have also gotten more severe recently. The flares used to stay below the knee, but the past several months they have gotten so severe they are now past my knee to my lower thighs. I have not found a dr here to help with my EM.

7

Hello again hot Mary.

I get that. I go through periods when I get terrible pernio in feet and Raynaud's in hands. Slippers gloves on just to have them burn then off they go. Back and forth back and forth. I have been having more problems with the freezing of late even though my house stays the same temp 58 degrees. It is warmer here lately yet I am having more freezing problems. We have had an unseasonably warm and sunny winter 40s and sunny and I haven't had that many problems with freezing. It has warmed into the 50s now but rainy. Interesting thing is I am freezing more even though I stay in at 58 all of the time. I am starting to think the moisture outside is effecting me causing more Raynaud's Pernio. It is still just a theory at this point but I am going to pay more attention to see if there is really something there. Maybe I should try a dehumidifier. If I could get the freezing in check I won't have to wear gloves and slippers that always result in a burning flare in time.

I hope you are finding the help you need.

Take care

8

Dear Hotmary,

Im so sorry to hear your symptoms are worsening- thats awfully frightening and distressing for you. . I know you have Raynauds but as yet still no EM diagnosis- right?. The offer for Dr's names and guides to relevant information still stands. I have several articles on Raynauds and co existing EM as many of us suffer both. EM and co existing Raynauds quite common, unfortunately. Like you I would choose Raynauds over the intolerable EM anyday. Are you minimising triggers heat, stress, fatigue, exertion,making lifestyle changes and using cooling tactics? http://forum.livingwitherythromelalgia.org/forum/topics/cool-tips. Would advise you take photos, keep a pain log and collate as much info as possible. Most of us have to be our own advocate.

Thermal imaging is a good step forward as it will show your inability for temperature regulation( have attached article for you). Its not a diagnostic but its something else to use as evidence.

Many members report varying success with Lyrica. 50 mg is low. Average dose is 300 x 3 times. Most EM'ers are on either gabapentin or pregabalin. I posted a new study yesterday on pregabalin success that you may find interesting.

Please stay positive. There are many treatments you can try out that may help you better manage your EM. Most EM'ers find they need a variety of drugs - a polypharmacy approach.

We are assuming its co related to Raynauds but have you had all the bloodwork, ANA tests for any secondary disorders?. Also what are you taking for Raynauds?. Some medications esp calcium channel blockers like Nifedepine can induce EM. Out of interest -was aspirin helping you at all?

QLD aussies on site you could contact are the following(Tizzy is no longer with us). Guppy, Frostbite and Blue - these members i know very well and they will get back to you :)

We have many other Australian members Renee <3, Bluebell, Ocker, Davipot and more :)

You also contacted TEA.They have a members directory - you could contact fellow aussies that way too.

Here are some QLD Em aware medics for you. We have other names for AU but not for QLD

Dr Anthony Espinet,
Pain
Management
/
Anaesthesiologist
Gold
Coast
Pain
Associates
27
Carrara
Street
Benowa,
QLD
4217
07
5539
4484

Dr David Nicholls,
Rheumatologist/Sports
Medicine
Stirling
Lakes
Medical
Centre
Coast
Joint
Care
Medical
Centre
Denna
Street
Maroochydore,
QLD
07
5443
1033
Fax
07
5479
2141

Ok. Thats me done lol!

Hoping you manage to have some more comfortable days

God bless

x

9

Thank you so much for this information Mads, it means so much to me. I admit that these past weeks, apart from two days and two nights, I have not coped well. Being physically isolated is difficult and I make no excuses for my state of mind, as I usually am a much stronger person. Trying to remain positive and see the funny side of this whole situation. These are just a couple of pics of the bottom of my feet. Could you or someone else possibly comment and let me know if they think it is EM (still no diagnosis) my DR. seems determined to choose another cause. For two days I was symptom free as it was cooler...now with a return to the heat and humidity I have painful burning feet again...this is milder than it has been during the worst of the summer. It is painful to walk and to wear shoes. The sensations do not stop and worsen as the day progresses and it is difficult to sleep. Would be most welcome to receive opinions. Thanks heaps

10

Hi. Just quickly looked at your photos. Whilst we can not give you a medical diagnosis , we certainly can give you our thoughts The soles of your feet in these photos look similar to mine.and many other members- bless you! Whilst it possibly is EM , it could be another condition like 'burning feet syndrome' Did i send you information on that - cant find that i did in any threads?. Because of the many differential diagnoses its imperative you really seek out that official diagnosis. The drs details we posted for you are all EM aware so maybe contact them if you continue with the stalemate situation.Take photos - plenty of photos, and build that folder of evidence ; cant stress that enough.

Try the cooling tips. I find wrapping the affected limb in a cold wet cotton cloth and then under fan fullblast the most alleviating. Nels wine cooler tip is another choice tactic to ease the burning a little. Elevation also can help sole flares. Standing on cold tiles is another . All these tips can be found following link sent you in previous mail.

Wishing you a comfortable evening as possible.

Big hug

11

As a physician of mine once said, "A horse is a horse, except when it's a zebra." It sounds like EM to me, but it is certainly worth letting your doctor look for other causes or underlying causes. Finding the right problem could help you know how to treat it.

But don't bother berating yourself for not being "strong."

A friend of mine just had a big whining, self-pity party about not being a good candidate for lasik... I'd roll my eyes, but I can understand why he feels it's not fair that so many people just go get their eyes zapped and then don't have to worry about glasses or contacts. And he's frustrated that he got his hopes up for nothing.

We all have the right to be upset with the things life throws at us from time to time, and the not-knowing stage of a changing body is always hard. When faced with the ideas of potential isolation, disability, and chronic pain... you have every right to be a little scared and anxious. I try to not let myself go down the rabbit holes, make a real effort to be grateful for all the good in my life, make a real effort to take care of my mental health with meditation, eating well, etc. But sometimes... you gotta acknowledge your fears, anger, sadness... Just don't let yourself dwell there.

Be nice to and take care of yourself.



Hotmary said:

Thank you so much for this information Mads, it means so much to me. I admit that these past weeks, apart from two days and two nights, I have not coped well. Being physically isolated is difficult and I make no excuses for my state of mind, as I usually am a much stronger person. Trying to remain positive and see the funny side of this whole situation. These are just a couple of pics of the bottom of my feet. Could you or someone else possibly comment and let me know if they think it is EM (still no diagnosis) my DR. seems determined to choose another cause. For two days I was symptom free as it was cooler...now with a return to the heat and humidity I have painful burning feet again...this is milder than it has been during the worst of the summer. It is painful to walk and to wear shoes. The sensations do not stop and worsen as the day progresses and it is difficult to sleep. Would be most welcome to receive opinions. Thanks heaps