Pain in ME–what helps you and what can I do?

lunarainbows said:
hi Adam just wanted to say, I really appreciate your advice, and you are absolutely right. I suspect if I go to another pain specialist, there's no guarantees that they won't be similar, and I don't want to put myself through that again. I will continue speaking to my GP. (I will go to my NHS appointment later in the year though, just to see if they will provide lidocaine infusions!)

Yes agree with suboptimal doses. I was thinking of asking to increase the nortryptyline. I actually think it's helping my stomach issues, even if I don't see much change in the pain yet. :)
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No problem. I think we all hope that when we finally get to see the right specialist, we'll suddenly be taken seriously and get wonderful care.

But quite often we have the opposite experience, so the best thing is to go back to a busy generalist who doesn't know enough to be actively prejudiced, at least.

Besides, I think GPs see many more patients than specialists on average, and tend to see them over longer periods of time, so in some respects they may have more understanding than the specialists.
 
lunarainbows said:
@voner I took I typed up sheet of paper with lots of notes on it all about my pain and as you said, described the different types of it. But honestly the pain specialist never mentioned anything that I wrote. I tried to be assertive as possible, and I had two people with me, but I just came away from it feeling sad. (I wrote a post above about an update).
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How frustrating. It sounds like you did your job by being well prepared and clearly communicating. The doctors comments seem to indicate that he has no options for you. although it’s a frustrating experience, in the long run I’d rather hear that upfront so I can move on and not get stuck digging a deeper hole of frustration.

I have tried really hard to appraise the knowledge and competency of a medical practitioner before I have met them, but mostly I am frustrated with the outcome. We are complex and confusing cases for MD's and few seem to want the Challenge of trying to help us.

Recently, I have moved towards trying to find and use MD's at University affiliated hospitals.... time will tell if that pays off for me. Of course, I am in a drastically different medicals/insurance system than you.

I did spend many years using general practitioners who were open to discussion and trying things. That worked best for me so far, but that option is limited because of the lack of expertise on my half and on the part of a general practitioner not knowing what a specialist might know. Also our medical system here in the USA has morphed and I have found far far fewer generalist MDs who are willing take the time and effort to tackle a difficult case like me. most of those types have gone to private pay and don’t take insurance (and charge rates I cannot afford).....so there are Pluses and minuses on both the specialist and general practitioner MD options...

These are just my experience and thoughts, I don’t claim any expertise in anything. Time has taught me that much.
 
I thought I would give an update and good news for everyone who has helped me :)

I took people’s advice here and started very slowly with nortryptyline. Chopped 10mg tablet into 10, slowly built up. And I’ve been on 10mg now for a couple of months.

It’s helped my arm pain so much! You can probably tell as I’m writing quite a lot again. Im getting told off by others though as I’m probably pushing it with how much I write, and don’t want to get pain that bad again! I am trying to reduce how much I write again.

But yes it’s been very helpful for me. I know it’s that; because when I tried to come off it (as I had very dry mouth as one of the side effects), my pain shot up again and I remembered how bad it had been before. It really does dull the pain - that awful burning neuralgia and muscle pain and nerve pain is really reduced.

I’m planning to ask for an increase in the dose - perhaps 20mg to see if it’ll help more. As I still do have leg pain etc and body pain and the arm pain is still there to a small extent. I’m also using lidocaine patches on my arms every day - I buy them on bulk from America instead of getting them on prescription as it’s about 45% cheaper. :)
 
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