Finally, the day is near. I saw him last November, but while he attended to my migraine pain problems the pain specialist sort of seemed to shrug of the EM pain.
I've had this EM pain since 2002 (I'm pretty sure that was the year). It was diagnosed as EM (I got my pots diagnosis at virtually the same time) in 2006. I learned early on that I could control a lot of the burning pain (but not all)with a very restrictive (and unbalanced, unhealthy) diet but in the past couple of years this is no longer true for me.
the past 2 years have seen me in burning pain all of the time. A lot of the time, it's quite intense. Some of the time it's noticeable but bearable but still there. I am confined to the house mostly, sitting in my underwear in front of fans. If I have to go out I suffer through the burning and the minute I get home rip of my clothes (the softest ones I have been able to find) and shower and plonk myself in front of a fan again. I dread leaving the house now as any increase in temp is going to make the burning hot feeling worse.
The diet no longer offers any protection against the burning.And I was not sleeping at all with the pain so my psychiatrist put me on Seroquel. A low dose so I could sleep. It took me many attempts to get on it and stay on it because of side effects, but eventually it worked and I was able to put up with side effects and get some sleep. But now, after 2-3 months of taking it I find I am no longer sleeping any better than I was before I started it. Plus I have gained a lot of weight. Some people who take this Seroquel gain enormous amounts and I'm one of them. So I have to stop taking it. Last year, I had managed to lose a lot of the weight I gained on a similar med. It took a year to do so. But I've put most of it back on again due to the Seroquel. Now I have to stop the Seroquel and start trying to diet again. I'm nearly 60 years old and it's bad in so many ways to be fat at this age (possiblitly of diabetes etc and I don't think I could handle one more health problem). Anyway, I'm back to mostly sleepless nights.
I have to get across to my pain specialist that this pain is so bad I can not function normally at all. I am so far from normal it's a joke. A nasty joke. I tried to do exactly that the last time I saw him, in November, but somehow or other he seemed to act as though it was unimportant. Not worth his attention?? And a simple matter to fix by giving up certain foods??? He didn't seem to have heard me when I told him many times that I have an already limited diet and have given up any foods that are thought to be a possible trigger for EM. I must admit I gave up the fight that day and left his office very discouraged and deep down I was blaming myself. I couldn't think of a way in which I was to blame, mind you. But I managed to think it was all my fault anyway. Doctors can have that effect on their patients.
Anyway, I've rambled. But I'd like suggestions on how to deal with this doctor. I don't want to stop seeing him in relation to my migraine management because he has proven to be pretty good at it over the past 7 and half years that I've been seeing him. He should be good at EM pain relief as he is a pain specialist --a rheumatologist. And he is a great advocate for pain relief. He is always giving talks to other docs about the necessity for adequate pain relief. But he seems resistant to the idea that I even have EM, let alone have pain from it. This is disheartening for me because if this well know pain relief advocate specialist does not seem to understand my EM pain, who will?
Because I already have one pain specialist managing my pain (for migraine) it gets messy if I start looking for another specialist to manage another type of pain. I tried to get my neurologist to help with the EM pain but he referred me back to my pain specialist. I guess they don't want to tread on each others toes. Or perhaps they might consider me as 'drug seeking.' I don't know. I just feel really let down by these doctors. I cry about it a lot. I never used to cry about my lot but in the past few months I can't seem to stop crying.
Oh dear I feel so sorry for you mainly as I am going through exactly the same! I started with it about 9 years ago, for years nobody wanted to know. Then I was diagnosed as diabetic and they said it was nerve damage, however I wasn’t diabetic it was an adrenal tumour which was removed last May. I also have RA, plus now found out I have thick blood as well so who knows which if als the cause and nobody has ever heard of EM! Last year my GP asked me was it the pain that was the problem after telling him for 9 years. I had a JAK-2 test to see if that was the cause of my thick blood. It was negative so they said no further treatment required! So I am stuck with nobody even seems to think there is anything wrong even though a few docs have seen me during a flare. I am like you stuck here inside. On top of that I think I might have a DVT, as my left leg is really blown up and hard. I am going to phone for a home visit tomorrow if they refuse which is normal these days I am going to ring 999. I live on my own nobody available to take me but so I have no other choice. Sorry if my typing is bad I am shaking it’s 2.25 am and still awake. Good job there is this group as a couple of times I have thought of taking my own life then I found all you people and it has given me confidence that I am not goinlg mad!
I'm so sorry that you are in so much pain. It is completely absurd and shocking that this doctor doesn't acknowledge your EM - especially being a pain specialist and advocating pain relief! I was told I should get some common sense because there are people with worse conditions once, by a doctor - they can be ridiculously insensitive, shouldn't be allowed in a doctor. If only there was a way for patients to record pain and then the doctor could play it back and experience it, this would stop. I just went from doctor to doctor (quite a few) until I found one that acknowledged the EM and tried to do something about it. Our doctors have to either be familiar with EM or open enough to learn about it, anything else is a waste of time, money and energy.
Good luck for your appointment and hope you get better!
I know exactly what you are ging through - I waited 17 months to see the Pain Clinic in Canberra (I live in Cooma NSW - 100k south) and it was a total and complete waste of my time - effort and fuel money as all they wanted to do was to take me off the Tramadol and put me on Oxycontin .... I drove home totally disolusioned with the medical profession and the so called doctors - most of them just couldn't give a toss - I just basically rely on my local GP as she is more understanding of my condition/s and treats me like a human being .... I keep trying to find something - anything that will help with the burning pain but there seems little that will do the trick - 150mg Pregabalin twice daily helps to a degree and if bad swelling and burning is triggered by food/s or heat I will also take 3 panadol osteo and 2 nurofen migrane tablets which don't help the kidneys much, but do help with the swelling and pain a little - takes the sharp edge off for a while ....
I do HOPE that the pain management person/doctor can HELP you - Please take care of yourself and speak out till you are heard -
I am anxious about this appointment. I have gone long enough trying to manage this on my own and what I used to do doesn't work anymore except for a fan. Surely this doctor can offer me up something other than a fan.
I'm sorry to hear you are on your own at home sheltielife. I am too, virtually, as my husband is not a very empathetic soul. I have learned I have to handle this stuff myself, for the most part. I do have a sister who helps me get to doctors appointments sometimes. She has her own health problems so I don't like to ask her too much. But it is her support and the support of the members of this forum that have kept me from going completely insane, I think.
I am starting to think that visits to these doctors make about as much sense as CATCH 22. Or better yet, have you seen the old Abbot and Costello comedy skit, 'Who's on first?' It's available on youtube and many of my experiences with doctors have been as ridiculous as this comedy piece but not as funny. Have a look for it, if you want a laugh. I wish I could link it for you.
I just watched it again. I get a laugh every time.
I have a great pain doctor, I am going to see him Tuesday. I haven’t really discussed all my pains he is just working on y back pain for now. His site I has she very useful info on pain management; Www.painworld.com look at the “Pain toolbox” that he has on his site, it is very informative.
When I discussed EM with my rheumy, she said “what do you want to do?” (She knows me by now) I said that we could stay the course with Cymbalta, but now I may look into the Calcium Blockers. The main thing, you have to go in armed to the teeth with info, don’t rely on the doctor to know what they are doing…
Hey Blue, I know it's easy for me to say this, and not always simple when you are confronting the doctor, but this is your life at stake and you need to use your voice and not let this guy intimidate you. You are a strong woman, and of course, you're so vulnerable and need a dr. to be a support system, but in reality, he's not listening to you or treating you with respect. So, you have to really call on your inner professor, have a strong, solid, deepish voice and force him to hear you and how serious you are. Early on in my treatment, my rheumatologist rolled her eyes at me because she couldn't believe I was putting cool packs on my feet since I have raynaud's (she wouldn't acknowledge my complaints of my feet being on fire), and I seriously looked right at her and said, "Don't roll your eyes at me." And this is the most intense powerful woman doctor I've ever met. After than she started listening to me and we actually have been communicating better and better ever since, like equals. He is your equal and he's supposed to be serving your health. You can do it! Practice a little bit--strong tone, don't back down.
I've walked away from doctors who don't respect my opinions about my health. There's nothing worse than a doctor that thinks you're faking it or crazy. You need a partner in solving the puzzle, not someone to fight with or prove yourself to. You need to believe in them... and they need to believe in you. Sometimes, it takes saying goodbye to a few people before you find the right match.
That said, keep in mind that doctors are rushed, pushed by insurance companies... and held liable for enabling addiction or pill seeking.
So... help him out a little. Start with the EM rather than the migraines. Address the entire condition (not just the pain). Make sure he understands everything you have tried, and just how much the symptoms are affecting your life.
I like to write down what I want to say and focus on before hand. I take photos of my flare-ups vs normal (on my phone) to take with me.
If you leave frustrated for a second time, I would try to find another doctor.
Dear Blue - your post is so heartrending. You clearly feel very very trapped by your condition, and this is an awful situation to be in. It seems odd that even though you have had a diagnosis, your pain specialist seems resistant to the idea that you have EM. And it does sound like you are being bounced around from one specialist to another. I wish I had some simple advice to offer that might help...but I don't think I do - beyond thinking that you need to find a really clear way to convey how distressing - physically and psychologically - your condition is, and how deeply it reduces your quality of life on a day to day basis.
Awh omg I couldn't help but feel a sense of nostalgia (erythromelalgia nostalgia - I feel like there's some word play there somewhere!) I know EXACTLY how you're feeling. The most important thing to do is focus on the positives in your life (even if you don't think there is much) it can be anything from a relative to a favorite show (that last one especially) and look forward to something exciting in the near future...maybe a favorite meal you're planning on eating lol.
A complete life saver doctor I found is Dr. Elliot Krane. Just last week he did a capsacin cream treatment in Palo Alto and I didn't have to get an IV or an epidural or anesthesia or anything! just some oral Percoset! It worked crazy well :) I'd give him an email or call if that sounds like a possibility.
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Tell him Kelsey Larson says hi if you talk to him!
The pain specialist is good for migraine pain (or has been until now) but SO FAR my EM pain is not getting any recognition. I see him privately. I did go to a pain clinic years ago and they were as useful as you know what on a bull. My gp is not willing to prescribe much of anything that he hasn't been told by my specialists to prescribe. He's a nice enough bloke I guess, but I am absolutely gobsmacked when I see him and tell him him painful this burning skin is and he doesnt even try to apply himself to the problem.
The only reason I stick with this gp is he is right next door to my block of appartments and that is convenient because I have to see him monthly for the migraine meds he prescribes on recommendation of the pain specialist. I havent had any luck with gps since my old family gp who treated us for years passed away. I know he would have listened to me. He was a good man and the best doctor Ive ever seen. Plus he liked me a lot and always listened to me. He once said I had great instincts when it came to my kids health and he told my motherinlaw I was a wonderful mum. Lol. How could I not like him? that was many years ago, of course.
Im glad to hear you have a good gp.
blue
frostbite said:
Hi Blue -
I know exactly what you are ging through - I waited 17 months to see the Pain Clinic in Canberra (I live in Cooma NSW - 100k south) and it was a total and complete waste of my time - effort and fuel money as all they wanted to do was to take me off the Tramadol and put me on Oxycontin .... I drove home totally disolusioned with the medical profession and the so called doctors - most of them just couldn't give a toss - I just basically rely on my local GP as she is more understanding of my condition/s and treats me like a human being .... I keep trying to find something - anything that will help with the burning pain but there seems little that will do the trick - 150mg Pregabalin twice daily helps to a degree and if bad swelling and burning is triggered by food/s or heat I will also take 3 panadol osteo and 2 nurofen migrane tablets which don't help the kidneys much, but do help with the swelling and pain a little - takes the sharp edge off for a while ....
I do HOPE that the pain management person/doctor can HELP you - Please take care of yourself and speak out till you are heard -
Thankyou jon, sunshine trees, gina, larsen and monkey for your responses. You've given me some great advice. Im going to read it and reread it and get back to you all. But just wanted to say thank you for you fast responses.
Oh, one more thing, when you see the pain doctor they ask for a number of your pain level, read the explanation of each level, then give the doctor a realistic assement, that way he will be more receptive to the EM pain. If you say it is a 10, he will likely roll his eyes, because you should be almost unconscious with agony… https://workthedream.wordpress.com/2011/12/16/how-to-use-a-pain-scale-chart/
Thanks for that info very useful to know. Mind you I am not even referred to the pain clinic yet, so probably irrelevant to me! However, I suppose all doctors must have an idea of what the numbers 1 to 10 mean and so it could be useful anyway. Like someone said early shame we can't give these doctors the same pain as we have then they might listen!
Don't let your doctor treat you as less than. He/she is not your better. You are the one experiencing the pain, which makes you eminently more qualified to describe it. Your doctor's job is to listen to you. If you're not getting through, present your concerns like a legal case -- Document the evidence. Take pictures of the affected areas during flares. Offer to invoke a flare in his/her presence to allow him/her to visualize it. Keep a food diary and corresponding daily/hourly pain score to demonstrate a flares responsiveness/non-responsiveness to dietary changes. Do not take "no" for an answer.
Oh goodness....dear Blue. Reading your message I can truly identify regarding your Doctor. Please do not be so discouraged. You have a place here where people will lift you up and will understand your situation. Nobody can see pain as it is such a personal thing and subsequently it is so easily dismissed - a cut finger will produce more sympathy because the blood flows!!! . My own GP has never heard of EM and is determined to find another cause for my symptoms. I would rather not have it as I cannot see myself coping with it each summer. You have multiple issues and I truly feel for you. It has been my experience throughout life that there is always somebody worse off, but then it is also relative, and somewhat easy to forget when you are gripped by debilitating pain. Hang in there Blue and I sincerely trust that your appointment will bring a positive outcome.
The info is for the patient, not the doctor. If the doctor asks what pain level it is, if you say it is 9 and you came in on your own volition, and you are functioning normally, he will not believe you and rightfully so. If you give the doctor the correct pain level according to the pain chart, then he will be able to give you the proper treatent.
sheltielife said:
Thanks for that info very useful to know. Mind you I am not even referred to the pain clinic yet, so probably irrelevant to me! However, I suppose all doctors must have an idea of what the numbers 1 to 10 mean and so it could be useful anyway. Like someone said early shame we can’t give these doctors the same pain as we have then they might listen!