@BethDarnall @eileendove910 Glad to hear that.
@BethDarnall @eileendove910 As an EDS patient, I’ve had pain since I was young. As a young adult, I was finally was able to get substantial relief from a combination of pain meds and exercise/PT, tizanidine occasionally, etc. After a few years, I decided to taper myself to make sure I really needed LTOT.
@BethDarnall @eileendove910 My hope was I could manage with occasional pain meds instead of all the time. No one likes to be physically dependent on something, esp when barriers are increasing from DEA, etc.
@BethDarnall @eileendove910 I wrote up a plan, showed it to my PCP, and executed it. For an entire year, I tried other things. From that experience, I gained the tens unit as a tool. It wasn’t enough. I ended up having to go back on pain meds, much to my dismay, b/c I was in too much pain to do my PT .
@BethDarnall @eileendove910 My QOL was terrible, I couldn’t do the other things that also reduced my pain and the accompanying depression. This was 8 yrs ago, before all the forced tapers began.
@BethDarnall @eileendove910 I was devastated that I had to go back on them b/c I really believed I’d feel better without the meds. Being very determined, this was a major blow. After I started taking them again, the difference was night and day. I was spending time w my family again, and being active.
@BethDarnall @eileendove910 Now ff to recently with all the talk about how they don’t work, cause worsening of pain, constant pressure and stigma from society AND the medical community. This med saved my life and now every day I have to think about how there’s no guarantee I’ll have access to them now.
@BethDarnall @eileendove910 This isn’t just low back pain patients. The ones MOST effected are the very least studied and most painful. Do researchers realize that patients actually think the US is trying to kill them? This is terrible. This is tantamount to war crimes!
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