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4 hours ago · CRPS in Chronic Pain

I have had CRPS for 11 years to the best of my knowledge. I had surgery on my right foot. The doctor fused my toe in a poor direction and shortened my second toe but caused it to cover my third toe. In the process he used metal to hold things in place. After complaining of pain for 8 months I went to a podiatrist who operated and removed the metal which she declared was too large for my foot. All of that set off pain that hasn't ended but increased in area – also moving to other foot, knee, and butt. It's the feet that give the most problem. I use a power chair in the house but have no ramp to get it out. Standing is very painful, more so than walking. I had my second spinal cord simulator implanted last summer. It is more helpful than the first one I had done in 2012. But there is another implant surgery my pain management doctor is going to be trained in that will deal just with the feet. Anyone have it?

Thu, Jun 6 7:03pm · Dementia: Just diagnosed and scared in Brain & Nervous System

I am in New York. I will call and check and see what's available in your area.

Sun, May 19 11:54am · Small fiber neuropathy and CRPS/RSD in Neuropathy

I had 2 biopsies done to determine the SFN. Thank you for the references. It's been almost 20 years since the SFN dx and I quite frankly forgot what sent me to NYC for the biopsies. Now I know what these zingers are that I get and, while they don't last long, they do grab my attention. I cannot tell the temperature of my feet or hands at times unless I touch them to each other or to my leg or arm. I have had dry eyes for as long as I have had SFN. Around that same time I was dx with SVT and orthostatic hypotension. I know I have been told I have autonomic dysfunction which sounds a lot like the separate things I was dx with but no one connected them back then.

I had a surgery on my right foot that didn't go well for me. Nine months of pain and I saw another doctor who removed the metal in my foot declaring the metal was far too large for my foot. One day at PT they called the ambulance as the nasty burning pain in my foot was beyond a 10. It has progressed to my other foot and left knee. Both feet have lovely shades of white,blues, and reds. They are swollen. At times there are parts that are shiny red. The pain on the bottom of my feet never goes totally away. I also have pain on the top of my feet which annoys me that,though they are numb, I still feel pain! My first SCS was implanted in 2012 and my second updated version just last July. I see pain management on a regular basis. I recently had nerve conduction tests and EMG done. The results – severe sensorimotor distal neuropathy. I also received a dx of StiffPerson Syndrome as I had an episode on the table while being stuck with needles. I guess these things are all connected although not one doctor has taken charge over it all. I am changing neurologists and hope there might be some better explanations and coordination of management although I gather I have progressed beyond the point of physical help.

I use a power chair at home, a cane out side of home, still drive, shop only where martcarts are available, take care of my husband who has dementia, and try to do some gardening when it isn't raining in the great Northeast!

Sat, May 18 6:31am · Small fiber neuropathy and CRPS/RSD in Neuropathy

Does anyone else have both conditions in their feet? Can one be distinguished from the other?

Sat, May 18 6:08am · Spinal Cord Stimulation in Neuropathy

I had my first SCS implanted at age 68 and an updated version just last July at age 74. I am loaded with Degenerative Disc Disease, small fiber neuropathy, and Complex Regional Pain Syndrome in both feet and left knee. I consider myself fairly active despite my conditions. If it ever stops raining in the northeast I look forward to gardening. I am doing more in containers than the ground as it is easier on me. My husband has dementia and I care for him at home. My 15 year old granddaughter keeps me on the go when she comes. I will admit to using a power chair in the house simply because of the painful feet. I just had a sural nerve injection to calm down the pain in one foot with another scheduled for my other foot. I am fortunate to have a superior pain management doctor.

Wed, May 15 6:38pm · Dementia: Just diagnosed and scared in Brain & Nervous System

Thanks for the suggestions. I will try them out. The PT asked him about being in control. Oh no, I don't want to do that. Then he told her he had a chance to move to a managerial position in his job but he wanted nothing to do with it. Too much responsibility. Likes others helping him at this point and making decisions for him.

Wed, May 15 5:23am · Dementia: Just diagnosed and scared in Brain & Nervous System

When he doesn't recognize me as me, I have often felt a very deep pain in my heart. My therapist says it's grieving the loss. I have a tough time responding not knowing who he thinks he's talking to. If he mentions my name and asks where I am I can respond with she's upstairs or outside gardening. Several times when we have to go somewhere he has asked what car are we using and do I know how to get there.. We only have one car! I tell him we will use the car in the garage. Yes, I know the way.
With PTs and OTs coming in, he is very confused about who is who, yet he is very social with them. He can tell them anything and they don't know he isn't telling things as they actually happened. Only I know and I don't correct him. If it is something they need to know I walk them to their cars and make corrections then.
Thanks for the new sites..

Mon, May 13 6:53pm · Dementia: Just diagnosed and scared in Brain & Nervous System

Thanks for asking about my husband. He has had a difficult time lately. He became dehydrated.I did some research and found that people with dementia often don't feel thirst so I have been trying to get more water, soups, ice bars, grapes, watermelon, etc.into him. I am not very successful. He has become very stubborn. He fell and spent two days in the hospital with a subdural hematoma which has really set him back. The doctor ordered nursing, PT, and OT at home. He has fallen twice in one day since then, thankfully without injury. Now he MUST use a walker everywhere. He often doesn't know me as me. I am never sure who he sees me as. He cannot be left alone anymore. I do have a grant for some outside help which is ever so helpful. He has several other serious physical problems that all seem to be screaming at the same time. He does not feel much, if any, pain – another thing that goes with some with dementia. I have looked into assisted living. The expense is way beyond our income. The new neurologist I have chosen for my husband believes in keeping people at home and is more than willing to support the caregiver. I didn't know that when I chose him. Very fortunate to have him on our side.