Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

 
 
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Old 01-25-2015, 10:36 AM #4
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Littlepaw Littlepaw is offline
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Littlepaw Littlepaw is offline
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Join Date: Nov 2014
Posts: 1,537
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Hi Marci,

So sorry for your suffering. It can feel very lonely going through such tremendous difficulties. Most people can't get that making it through the next hour, five minutes etc. takes everything you've got sometimes. Everyone here can and someone will always throw out a lifeline.

I too am a 40's mom with lower extremity nerve injury, multiple surgeries etc. I have had to fight back from crutches, a scooter, then walker and cane. I understand how much work it takes. Nothing has been a magic bullet for me but many things have lead to small gains. I have found the pool to be a lifesaver. If you can get to one at a local Y or community center, I found that even when I was not mobile yet getting in the pool with a weight belt so that I could move my limbs freely went a long way towards easing spasm and maladjustment in various muscle groups, hips, back, etc. I will ride a stationary bike for only five minutes if that is all I do. Moving helps me feel stronger and less hopeless and five minutes is better than no minutes.

I have found even a single glass of wine to be a trigger for what I call "circulatory flares" that lead to burning/stinging in my foot. I avoid caffeine and foods that I have even the slightest sensitivity to, which includes the nightshade family, tomatoes, eggplant, peppers, etc. These trigger delayed immune response in some people.
As far as supplements, Vit D was found to be low by my neurologist, VERY common in women our age. Low D worsens chronic pain and nerve symptoms. I take 1000 iu daily now.
On drugs, PM just offered me blocks or opiates both of which I have been avoiding. Neurontin made me feel horrible. Neuro put me on nortryptiline and I have found it helps the stinging without killing my mood. I will take a low dose of tramadol if I am absolutely dying. My meds are only before bed so I can sleep better and don't feel too foggy. There may be options you haven't tried.
On doctors, I have found physical medicine/rehabilitation to be helpful. Their approach is different and they take care of lots of chronically disabled people with a goal of improving function. They can also provide some alternative treatments such as botox for muscle spasm or PRP for tendon/ligament problems that help some people.
Lastly, I pray. Maybe not PC to say but I do. Every day. For myself, for my family, for everyone one on this forum, for the strength to keep doing this and not lose myself in it. Hang in there, you are a dedicated mother with the heart of a Tiger and we all know Moms never give up.
Sending Healing Love, Littlepaw
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