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Re: What Relationships?

Posted: Sun Jan 06, 2019 3:01 pm
by restlessknight
Bless you for the kind words. I certainly will discuss this information with my doctor. I will try the pills in for now. Are these infusions something you or someone you're aware of have tried? If so,what was the efficacy? I would also be interested in knowing how you personally deal with things.
How bad are your symptoms? Do you have a support network etc.?
Once again, thanks for the kind words.

Re: What Relationships?

Posted: Wed Jan 09, 2019 10:29 am
by restlessknight
Thanks you very much for the kind words and information. I will try the iron pills. I will also discuss infusions with my physician. Has this been a treatment you or others have tried. If so, was it effective? I'm also curious about the severity of your symptoms and any coping skills used to deal with them. Thanks again

Re: What Relationships?

Posted: Fri Jan 11, 2019 3:14 am
by badnights
restlessknight, if you don't mind telling us, what are you taking now and how much? I wonder if you're augmenting - if you're taking a DA, you might be.

Before starting iron you should be sure you can safely do so (no danger of iron overload, and iirc you're not supposed to take iron with thyroid medication.)

Holland and Ann (viewsaskew) and a few others here have gotten iron infusions. Lots of us take oral iron, myself included (though I would love to try infusions and perhaps rid myself of some or all of my medications).

My coping strategy is similar to yours but not so coherent :)
- Also - a big one - I have lowered my expectations. I can't do as much as I used to, and I can't do it as well, but I'm still a nice person and have some intrinsic value.
- I never (anymore) waste any energy getting angry about it all. Would have could have what would I have been like if this hadn't happened to me - - those thoughts dominated me for years but I have, thankfully, gotten rid of them for the most part.
- Something I'm working on now is treating myself gently - getting rest when I need it, even if I can't sleep: just sitting or lying if my symptoms will let me, and physically resting. For years I walked or stood the entire day - at work, reading at home, eating - always standing. I recently discovered that I don't need to do that anymore, and my body is enjoying the rest.
- Another thing I'm working on is de-stressing. My job has become very stressful since I'm still trying to act like a fully functional person and I haven't been for a long time - the lowered expectations thing - and we know how stress makes everything worse, including WED/RLS. So I am getting back into meditation, with only 10 minutes a day most days, but sometimes multiple times a day. My doctor even asked if I wanted meditation to be prescribed to me! She considers it that important. The trouble I have with it is falling asleep - realizing I am dreaming, not meditating.

My entire support network is this discussion board, without which I would be - well, maybe dead. I'm not sure.

My symptoms have been called the most severe my neurologist had ever seen. He had not seen many bad cases, but they were very bad then. They have improved since I eliminated gluten, dairy, added sugar, and heavily processed foods, and added vast quantities of vegetables and some organ meats and more fish. My symptoms are fairly well controlled with 9-10 mg hydromorphone. My biggest problem is the associated insomnia - I can't get a deep sleep. In fact, I can't get any sleep at all during the night without medications (zopiclone, pregabalin, and now also some CBD:THC oil), but I can still fall asleep in the daytime some times. I don't get a chance to try it very often. (another reason I should quit my job).