Health & ME/CFS

Still, Surreal, and Chocolate

I just hopped onto my blog searching for some info on my Lyrica dosage and weight, as I’m about to go see my LLMD/rheumatologist, whom I haven’t seen in almost a year. While sorting through the mess in my room, asking myself why on Earth I don’t actually file important info like my old labs so I don’t have to hunt for them, I came across a receipt from my neurologist’s office, from May. With it was a RX for Lyrica, 150mg, 4 times a day – a total of 600mg a day.

I remember getting it.

I remember at the time, I was on  225mg twice a day, for a total of 450mg a day.

I remember adding one of my leftover 150mg capsules to my already filled med boxes, which brought me up to 600mg a day, the target dose.

But I can’t remember what happened after that.

Why didn’t I get the RX filled? Was it because I couldn’t tolerate the 600mg a day dosage? Had my PCP nixed the 600mg a day dosage?

A lot was happening in May & June, so maybe it just got missed. But I’m usually so careful with my meds. I usually know what I’m taking better than the doctors do. It bothers me that I can’t remember. A lot.

But as I was reading through my June blog posts looking for a clue, I re-read a post I wrote called “The Stranger In The Mirror.”

Of the 107 posts on my blog, I think it is one of the most revealing, the most poignant, the most touching. Maybe it was too revealing, too personal.

It brought a great sense of stillness inside to re-read it, and know I’m still there, at that place. Only a little bit more so. Three pounds more so – my weight has continued to drop, and I’m now 119# and struggling to keep it from dropping more. Struggling to eat enough calories just to maintain my weight.

Last Thursday, I stood in Walgreen’s with Rhiannon, while she encouraged me to buy chocolate.

It was surreal.

I’m sure she thought she was being really subtle about it, saying she was craving chocolate.

But we’d just come from the PCP, who expressed her concern about my weight loss, and said if I didn’t stop the downward slide that she was going to have to “do a major work-up.” I found it slightly amusing as she said it in a somewhat threatening tone, trying to impress upon me the need to eat eat eat & so avoid whatever the “major work-up” would entail.

But I’m not easily scared by medical procedures anymore. I lost my fear of needles, blood draws, scans & MRI’s & EKG’s & EEG’s & all the rest of that crap a long time ago.

How very far I’ve come.

4 thoughts on “Still, Surreal, and Chocolate”

  1. Hi Ash, Finally a few minutes of brain time for me. I took Ruthie to the dog park and for the first time she wasn’t afraid, but instead, was the big dog to certain dogs. She was still nice as ever but since she met a boy dog recently, and she was the alpha dog, she has been different. She played so hard! Was nice to go out too.

    I am also losing weight. Went to a new Rheumatologist, she did labwork, for autoimmune stuff. She wouldn’t give me any opinion though, and said she wanted to see my prior records. I gave her permission, reluctantly. I kind of wish she would just start from fresh, but, oh well. And the memory thing, scares me too. I couldn’t remember many of my own symptoms! I have to call her back soon, very soon, and tell her what I forgot and one thing I said was wrong, so it could cause problems. Weight is down very low! Is so hard to eat sometimes.

    I’m going to a healer tomorrow. I had one visit and got a homeopathic remedy, which I usually don’t respond to, but my toes sure did stop hurting. They are sore and started cramping up, but the earlier pain felt like my toenails were being pulled. Apparently, there is something going on in my gut that has something to do with the new joint pains and possibly the worsening of fatigue. But, it could be part of CFS and Fibro. The gut is so important, and mine isn’t too happy lately.

    I hope your appointment went well. Are you going back on Lyrica? It helped with nerve pain for me, but it sure made me want to stay in bed. And made my words come out funny, like the wrong words, although usually related but not always. Very odd, but many people get lots of benefits from this drug I guess. Would be nice to get that weight gain everyone talks about wouldn’t it?

    Sending you well wishes, thanks for your very kind messages to me, and I hope we can talk soon.

    Lots of love and doggie kisses too,


    1. Hi Michelle!

      I hope your new rheumatologist can be more helpful than the last! Some definite answers would be nice, but some things like this seem to bring up more questions than answers.
      My rheumatologist has a very thorough check list that you do before each visit – simple things like how bad is the fatigue on a good/bad/usual day (scale of 1 – 10), the same for pain along with location, and then a very very long list of symptoms, from fever, palpitations, weight loss/gain, bowel movement changes, memory issues, word-finding, disorientation, dizziness, and on & on. It makes it much easier than having to remember everything! She specializes in Lyme, CFS, Fibro, etc., and most of her patients fall into that category.

      I need to blog about my visit with her. It was almost an hour long & we covered a lot of ground I’d like to share. Very tired & flared from the tooth extraction, though.

      You are very right about how important the gut is in all this – IBS is usually present in CFS & FMS, and often leads to leaky gut syndrome & a host of food sensitivities. I can’t do any dairy or wheat anymore.

      I’m glad you got out to the dog park with Ruthie – good for both of you!
      Sending hugs, prayers, & dogkisses!


  2. Hi Ash,
    The new Rheumatologist was not any better, and actually, I think I was set up by the bad one. I couldn’t figure out who sent me to her, but now, i think it was him covering his a**. She was determined to undiagnose me from anything she could think of. She never ask (on the second visit, and barely on the first) about my pain, much less the fatigue. In fact, she never asked about fatigue or remarked when I told her it disabled me. She was horrible! I asked in the end, what exactly SHE thought was causing my pain, as two positive ANA’s were not clinically significant she said b/c they came from two different labs. OMG, did I tell you this? I don’t think I have anyone. Finally I asked about the pain in my wrist, and she said it is osteoarthritis. At one point, while discussing different labs, I mentioned my feet and toes swelling and hurting, and she said, Oh Yeah, I haven’t even asked you how you are. It didn’t matter to her. She said good luck in life and to try some Qigong. I told her my little toe hurt when I stand on that leg. She just shook her head, stood up and escorted me out the door. I thought she was going to set me up with PT, right there in her office only a few miles from my place. I couldn’t believe it.

    And, I don’t have time to deal with my health complaints. Sigh… All I’ve been doing is writing hoping to get better care for my son. Am sooo tired, but thought I’d communicate here. I wish I could blog, but I can’t right now.

    With love, and many well wishes to you,


    1. Oh, Michelle, I’m so sorry the new doc didn’t work out. Totally ridiculous – she should have done a full physical exam & asked you in detail about your pain & fatigue. Without that how can she even call it an exam?!? We’ve got to find you a better doctor – one worthy of the name “doctor!”

      I’ll try to find the “good doctor” list for FMS & send it to you again or will post it here.

      It’s funny you mentioned the pain in your little toe – I’ve had bouts of “psuedo-gout” – gout is usually caused by uric acid crystals but mine is caused by calcium crystals, in the joint. One of the first places that shows up is in the toes, ball of foot, wrist, fingers. Despite the fact mine is “psuedo-gout,” the medicine for gout, colchicine, works for mine.

      I don’t have to take it all the time – it will flare up & I’ll take it a couple weeks & it will clear up, and then I might go months before I need it again. At one point, I had it in both wrists so bad that I had braces for both of them. Now, I mostly feel it in my big toe or the ball of my foot and as soon as it starts I take the colchicine, and in a couple days it settles down.

      The colchicine is funny stuff – its a very old & safe medicine. But when I take it, I excrete something in my urine – presumably the excess crystals – that forms a hard blue-green crust in the toliet bowl!

      That’s one of those things that any decent rheumatologist would check for!

      I’m sorry I’ve been so busy/exhausted lately – I wanted to write you about your son but will do that privately when I get a chance.
      Until then, many gentle hugs, Kodi-kisses, and much love!



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