Hi all , I'm John .
I need to find a Dr. I use a walk-in clinic and they do not have anyone that knows about EM . I live just outside Vancouver BC Canada . I don't know how to accept help and to just ask for help is a foreign concept to me . I haven't worked for 3.5 years and I do not go or do anything much now as both my feet/ankles are affected , they can be good one min (day month even) and tingle heat swell (all the nice symptoms) then I'm out of commission for a min to a year (I have no control) . I stay home and lately I have become bitter and mean . It seems any new stimuli and my system gets tripping . I will finish this request in a bit . Very tired now (Weather systems wreaking havoc on my feet ) Thank you John
P.S. - I have always (since this started 04/2011) thought I have CRPS/RSD .
Just about every symptom fits except I am best at colder temps . Walking in snow feels so good and stops many symptoms in seconds ??
It seems I'm loosing it .... Thx John
Hello John. I am sorry you have been suffering for so long and don't have a doctor that can help yet. I am glad you are reaching out now and asking for that help you need. I know it is difficult to do for some people. I used to be that person myself.
I will make sure Mads. Knows of your post here because she has a bit more info on doctors familiar with EM. If there is one she knows of in your area she will surely let you know. As a worst case scenario if there isn't one in your area you might have to start looking for a doctor that is willing to learn about it and assist you in trying the known treatments. Very little is known about EM so they wont be that far behind from the EM educated doctors. My doctors didn't kn ow about it either but were willing to read the research papers I brought in to them and they are assisting me in trying the various treatments as one works for some patients and not others so you have to experiment.
Have you seen a Neurologist? I think but could be wrong that they are most likely to be familiar with CRPS/RSD.
Thank you for reaching out John. Get some rest :)
I was hoping things were better since we havent seen you around forum. Im so sorry to hear you are still suffering. Have sent Alina Vancouver Dr for you( online later ). I get you John, the not being able to accept help, the bitterness..... its all part of the grieving process for the person we were and we want to be back as . Acceptance is damn hard. Acceptance will come but its made more difficult when you havent got a label, a definite diagnosis. I think you need to congratulate yourself on finding the energy to make the first move - accessing an EM aware Dr. If you can do Ottowa/Ontario I have plenty names. An EM aware Dr will at least start you on firstline treatments such as Gabapentin , Aspirin , Antidepressants such as Effexor.Anxiety is not helping your flares . I know its easier said than done but use us , talk to us and offload. Share your pain and emotions...... you will get there... honest;)
At top of forum we have pinned 'information for new members'- you may find it helpful. Im sending you some more information which may help you in terms of support.
Contact me anytime Ok
hello again John. Mads was so kind to send me the doctor information available in your area and I am posting it below.Thank you Mads. I hope this helps John.
I live in Texas so don't know any BC docs. After a small fiber neuropathy diagnosis from my neurologist I suspected I had EM and took a short scientific article about EM to my GP. I gave it to the nurse for him to read while I was in the waiting room. He read the article and was willing to try to find a medication that would work for me. The first one we tried was Savella. Took the foot pain away but other side effects were intolerable. The next med he tried was Carbamazapine. Helped some, but not enough. He added Cymbalta and jackpot. Pain gone, but appetite too big, so he reduced the amount of Cymbalta and I'm pain free with a normal appetite. Don't know if these meds would help you but good luck. I understand what you are going thru.
Here is the link to the article I took to my doctor. I think I also highlighted the symptoms that were the same as mine and the possible treatments.
EM research seems so new that it's easier to share info with an understanding and compassionate doctor than it is to find a doctor familiar with EM. Scientific research is moving fast but a good doctor is equally important. Hope this helps!
I just posted a reply to you but I need to tell you I cut and pasted the relevant parts of the article I took to my doctor to minimize the time it would take for him to read it.
May be easier for you to print off the TEA brochure. It is in the 'information for new members' post pinned to top of this forum.