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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi Michelle,
I'm doing better. Thank you for responding. My migraine and nausea lasted for 7 days. That's the longest I have ever had a migraine. Last few days I haven't taken anything for the headache & it has only been a minor nuisance. I munch on crackers when I feel nauseated. My mood is definitely better.

I have RSD in both my lower extremities with the worst of it being in the right leg around the knee area. I also notice that 10 days to 2 weeks into my cycle, my RSD flares up, especially if there is a weather pressure change too. Whether it's ovulation or menstration, that change in hormones can really cause severe RSD flare ups for me.

My pain feels like a throbbing bad tooth ache. I get muscle twitches at times. If the pain continues for a while & I can't stay on top of it (with rest and ibuprofen and some caffeine-green tea), then it becomes a serious mobility issue for me and I have alot of trouble walking and need assistance. I hate taking pain meds. They just make me feel doped up & totally unproductive.

I also have RLS so I take Klonopin for that (2mg) which I think actually helps with keeping my mood more stable as well as dealing with my restless legs (which I thought my RLS was just part of my RSD for several years). Normally, I am a very upbeat, positive person & I don't like to be defined by my disability. But pain wears on us all & it makes me cranky and I have to look at my day & decide what must be done or what will make me feel better if I do it and what needs to be put aside for another day.

I have found that using a small space heater (that is neatly disguised as a little fireplace) to heat up my bedroom & using an electric blanket can help bring my body temperature up. My legs and hands are always cold - sometime 20 degrees below the temperature of the rest of my body. Putting on warm clothes doesn't help. My legs and hands stay cold inside the warm clothes.

I also have trouble with clothing because my legs are hyper sensitive too. I find that I must shave my legs every other day (at least) or the tiny hairs on my legs will make it impossible for me to wear anything on my legs. Thankfully for me, it is usually just my legs where things get hypersensitive to touch. But just this week I broke out in a rash at my collar bones on both sides of my neck from a necklace that had some plastic beads on it. I have worn this necklace alot before, but wearing it during this particularly difficult time wasn't tolerated by my body and the rash is going down, but another sign of my body overreacting (RSD).

I find that distraction is a wonderful tool for me. I am a musician and music therapist by trade and I am thankful that I can make my own schedule. (I could not keep a normal 9-5 job.) Sometimes, I have to decide to do only my teaching & then come home & go to bed until the next day of teaching (and cancel any evening meetings or plans). It can be very lonely and tiring and it can make me feel very disconnected from my family when I can only work and then come home to go to bed. It takes so much more energy than what many others have to exert during their typical day, but in the end, it is what I do to deal with my RSD. I have to balance doing just enough. If I overdo it, I pay the price with a flare up that I can not get under control. So each day, if I'm not feeling well, I let myself off the hook emotionally & say to myself - If this starts to get to be too much, then I will call it for the day - and just giving myself permission to say I've had enough is a freeing experience. I remove my own expectations and that usually allows my students and my teaching to become a uplifting experience.

As far as the perimenopause, I started having symptons around 40 with night sweats, heart palpitations, huge mood swings, heavy periods, low iron (that caused me to feel not clear-headed), putting on weight and feeling old before my time. I had a few polyps in my uterus removed a few years back on 2 different occasions (again - runs in my family) & I do have some small cysts on my ovaries, but they aren't causing any real problems. I now take iron citrate as an iron supplement. I have always been anemic - it runs in my family. I am always cold and my low blood pressure just adds to it. After a few years of very painful, unstable and unpredictable cycles (back in my early 40s), things leveled off for me for about 4-5 years.

Now, at 48, I am in the throws of another hormonal perimenopausal change that is causing the latest round of problems for me. My periods are really wacky & I can't tell where I am in the cycle anymore. And it seems that my RSD is exaggerating my perimenopause symptons. I also agree that I don't attempt difficult or stressful tasks that require clear-headed thinking (like paying bills) when I'm not doing well.

I really don't want to do HRT (hormone replacement therapy). I would much prefer more natural remedies. I have used progesterone cream and have used it alot over the past few weeks. FYI - there are lots of progesterone creams on the market & the quality of them varies so check it out carefully beforehand if you decide that what's you need.

What I found doing my own research about perimenopause, which included for me the purchase of the book by Christiane Northrop MD called "The Wisdom of Menopause" is that generally it's not that I have low levels of estrogen (which is what HRT addresses), but that my progesterone level has dropped & is now NOT in balance with my estrogen. So taking more estrogen seems to me that it would just make things worst. And in fact, for me, it did. Back when this all started (late 90s), my OB-GYN put me on a birth control/estrogen pill to regulate things, but it made me sick 5+ days a week. I took myself off of it.

I see 2 different holistic type doctors as well as regular MD and OB-GYN. My MD is old school - Western medicine & doesn't know anything about other approaches. I thought my OB-GYN was more open to alternative approaches, but she's the one who prescribed the birth control/estrogen back awhile that made me so ill. I have a counselor/life coach that I see about every 4-6 weeks & she helps me balance my approach to my RSD along with sorting out anything else emotional going on.

One of the defining moments I had with my counselor is when I realized that I was bracing myself every time I saw a weather change coming, knowing it may put me in a tailspin. The energy I exerted just bracing myself for a possible episode was depleting me. I have had RSD since 1979 (although it went undiagnosed until 1988) so I know that I will make it through whatever difficult pain cycle I experience, when it comes up. I remind myself that I have the resources within me to handle what comes my way. I try very hard not to brace myself & see my RSD as this war enemy, but instead see my RSD as a ill friend that lives with me who reminds me to pay attention to what my body is telling me. It might sound strange, but just changing my orientation to how I view my RSD has helped alot. If I ignore the small signs that present at the beginning of a RSD episode (and don't slow down or rest), then the messages my body sends out get louder & louder until my body is screaming at me & shuts down (with a migraine or complete immobility). I am trying to listen & respond to the small signals I get now and not waiting for the shutdown.

I have a very difficult time asking for help and this is something I am working on now. I have this thought that I have already tapped out my family and my friends and so I am very hesitant to really let someone know how tough of a time I'm having for fear that I will sound like I'm whining. In reality, I am realizing that concept is my self-imposed idea. And there is usually one friend or family member who can lend an ear when I need to talk. Alot of times that's what I need - is to talk and be heard. Even writing to you helps alot! Someone else out there that is experiencing some of what I am. I don't feel so alone. Thank you for responding! Just sharing the experience is very meaningful!

Good luck & keep me posted on how you are doing!

Lori





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