Do you ever feel overwhelmed by all the ‘shoulds’ that come with adding new treatments to your pain management plan?
Do you ever wish there was a willpower booster to get you through treatment fatigue, information overload, and the frustration of feeling like you’ve tried everything, but nothing has worked?

This past month I’ve had a patch of insomnia that has prevented me from making any headway in the various treatments I had been trying. In the spring I started meditating, I have physio exercises, recommended supplements, a capsaicin application regimen for pelvic pain, prescription pills, weekly acupuncture … I also need to do something everyday that has nothing to do with my health conditions, or I go crazy (online courses, going to the museum, audiobooks etc.).

Mary Shomon, in her book ‘Living Well with Chronic Fatigue Syndrome and Fibromyalgia’, says “You probably feel confused, as I was, by all the conflicting. Information, and overwhelmed by all the options you have and the choices you have to make” (p. 3). After a year of trying to get better, this about sums up how I feel.

In addition, my Mom has recently expressed an interest in getting involved in my treatment, and wants to help pay for me to try Dr. Teitelbaum’s SHIN protocol (pay for supplements like d-ribose and so on). This seems like a good idea in theory, but she has all of the enthusiasm and none of the experience of treating chronic pain. That is, she’s looking for a cure and not a management plan; a magic bullet rather than a balance of different approaches. We’ve been on hold about starting because of summer vacations, but I find I’m nervous about discussing it further. I already feel overwhelmed by all the things I should be doing, and can’t imagine starting a whole new protocol on top of it all. But there’s the seduction of ‘but what if this is what finally works!’. And the SHIN (sleep, hormones, infections, nutrition) protocol is an exhaustive list of every naturopathic and mainstream medical supplement or drug you can incorporate to address the different domains. I went to see a naturopath to help implement it, but she has a lot of experience, and of course has her own ideas about what to try.

I think I’m going to take a 2 week treatment vacation. I need to focus on having fun for a little bit. Before that, I’m going to work on making a list of the different treatments that I feel help me most. I’ll work on incorporating them back in one week at a time – or longer – until I have a workable routine that makes me feel I have some control over my situation again, rather than feeling overwhelmed. I’ll have to think about how to incorporate the new ideas and protocols, but I feel they will have to get to the back of the line in some cases (or bud in front in some cases)!

Today I went to see a new family doctor. I have been putting off going for way too long. Ever since I got accepted to the pain clinic in my hometown and moved back from grad school to be treated here and live with my partner, I just haven’t bothered to get myself a GP. I feel like all I do is go to appointments – therapy, physiotherapy (physical therapy), accupuncture, pain clinic. It’s hard to volunteer for yet another one.

Anyway, I finally did it out of necessity. I can’t sleep. I’ve tried melatonin, valerian, magnesium, alone and in combo, plus progressive muscle relaxation, sleep music and sleep hygiene. It’s not working and my regular meds aren’t cutting it, so I keep resorting to nytol/benedryl at 1 am.

At her office, the GP came in wearing leggings for pants and a white blouse. She didn’t smile and only stared at the computer. She addressed the sleep problem by saying I need to find the underlying emotional issue and deal with it. She reluctantly said she’d write me a temporary Rx for zopiclone. No mention of any alternative supplements or mind/body suggestions. That’s not surprising but you’d think she’d say something other than if the Rx doesn’t work and I still can’t sleep there’s nothing else she can do.

And honestly, I sincerely don’t want more meds, and I don’t appreciate being treated like I do. You also don’t need to tell chronic pain patients that there aren’t magic bullet cures. I know – I’m still in pain.

I’m also very careful to manage my stress with meditation, some tricks from my old cognitive behavioral therapy group (challenging negative self talk by asking how true or rational it is), – and I’m in therapy. So believe me when I say the only stress I’ve had is a flare up of pelvic pain two weeks ago.

What I wanted to talk about is whether I’ve habituated/developed a tolerance to my meds and if they should be tweaked (like sub something for my flexeril). Finally, sleep disturbance is a SYMPTOM off my illness! Therefore it might be set off by something other than stress, and isn’t like insomnia in healthy people.
But no referral to a sleep specialist was forthcoming.

Her suggestion – see the pain clinic. My problem is that they are so overwhelmed with patients that you get in only every 3 months or so. For urgent issues the recommend that you see – your GP.

At the end she tried to rush me out. I wanted blood work to check iron and B12 (and vit D and thyroid, but I didn’t get that far). She asked me if I eat the right food and said I should continue to supplement. No point getting checked. This is in opposition to everything I’ve read saying you should make sure there are no underlying deficiencies contributing to fatigue and pain.
What a relief to walk into starbucks, get a smile, and receive what I asked for. If the barrista can do it, why can’t my Dr.?