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I had two strokes about 14 weeks ago, described as a vertebral dissection. I have been recovering well during the time between the hospital, SNF, and then at home. I am now able to walk without a cane and have returned to a partial schedule at work. I consider myself very lucky to have done so well.

 

What is not doing well is the numbness and lack of feeling on my left side. Since my stroke, my left hand has been freezing cold and it is moving up toward my elbow. Most of my left side is numb, especially my ankle and left foot. In the midsection, I feel numb also. The same applies to the right side of my face. My right nostril is always partially blocked, and there is numbness in side my mouth and on the eye. When certain parts of my left side are stimulated, it reacts in strange ways. For example, if you tough the bottom of my foot, my leg starts shaking. Although this was not especially painful, it gets worse each day. The coldness and numbness with my left had gets a little worse each day, and the coldness is painful. I sleep with a ski glove on. When you touch both my hands (someone else), they are the same temperature. .

 

At first it was something I could ignore, but by this point is pretty painful, and it keeps getting worse. My Dr. put me on Gabapentin 300 at night, and said for me to try 600, but it does not really seem to help. The numbness in my leg is starting to negatively affect walking. I cannot feel when I kick or step on something.

 

My biggest concern is that this keeps getting worse. Where will it be in a year or two? Does this sound like CPS to those of you who are more experienced with it?

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I know the one person who is my wealth of knowledge regarding this is SassyBetsy.   My heart goes out to you for I know I have  Raynaud's in my Feet  and they go numb all the time with pain and by no means am I trying to equate that to what you have but  I have compassion xxoo

 

 

Central pain syndrome is characterized by a mixture of pain sensations, the most prominent being a constant burning. The steady burning sensation is sometimes increased by light touch. Pain also increases in the presence of temperature changes, most often cold temperatures. A loss of sensation can occur in affected areas, most prominently on distant parts of the body, such as the hands and feet. There may be brief, intolerable bursts of sharp pain on occasion.

https://www.webmd.com/pain-management/guide/central-pain-syndrome

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I have numbness, but not CPS. I also have a sensitivity to cold, with my lt. hand and foot being the most sensitive. If I sit too long without moving, especially if I'm cold, my hand and foot can get painful. But, if I get out of the cold, and move around a bit, they usually stop hurting. I just wanted you to know that you can have your symptoms and not have CPS. Also, I am non-ambulatory, and have spasticity and tone.I don't think you have spasticity, maybe some tone. I can walk, even with spas. and tone,just can't walk alone because of balance.  In other words, you could have some tone,and not know it.CPS issues need to be addressed by someone who knows more about it than me. 

Becky

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I have CPS on my right side, not a lot of fun I can tell you. Your best bet is to talk to your doctor and get referred to a neuro or pain doctor who can diagnose it. It took them several weeks to actually diagnose me once I got in to see a neuro who was knowledgeable of the condition. He had to eliminate a vitamin D deficiency which I had so correct that first and see what happens. Then lupus and a host of other potential candidate causes including screening for some exotic genetic variations. CPS is a diagnoses of exclusion which requires elimination of all likely causes and a lesion in the brain often in the thalmic or pariatal areas. The diagnosis took some time for me, the treatment longer as it is a trial and error process. What works for me may well not work for you. Frustrating for you and the doctor if they or you want quick results.

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On 7/22/2018 at 8:38 PM, becky1 said:

I just wanted you to know that you can have your symptoms and not have CPS. Also, I am non-ambulatory, and have spasticity and tone.I don't think you have spasticity, maybe some tone.

I agree with Becky completely.  I have had CPS for over 20 years.  You did not mention any of the primary symptoms of CPS.  I created a website just about CPS but I wrote it with practical words that are easy to understand. 

 

BTW, the most common drug for tone is Baclofen.  The leg shaking is called Clonus.  The est treatment for it and tightness you have is lots of stretching several day throughout the week.  I also recommend daily walking.  You should increase how far you walk gradually. 

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I have a right hand and arm that feels like it is in the freezer. I have 2 sets of hand warmers.one pink and one new one in mint and teal that looks hand knitted and lined in black flanel. Softness against the skin is a must for me because it is sensitive. I have full use but it is always a burning cold. I have also cut socks into hand warmers. I got these holiday or cat socks and cut top off and a thumb hole and then have soft light warmers.

 

I only know my experiences with half body numbness and leg pain. My right foot is numb now but not like in beginning when I could not feel it in a shoe or know when I walked. This improved. I was told all of the strange nerve sensations was the healing process and it is good sign. For me this was true because I feel a little more.

However middle body is numb on right side. I joke I could get a tattoo easily now but I do not like them for me because of my dealing with psoriasis. I am good on that now too with cream regimen.

 

Where will you be in the future is only known by the crystal ball of life. I believe you must be positive and hopeful. I still do physical therapy. Do the homework. Get to love and accept your body as it is now even though the loss of a youthful body is indeed hard. I have cramping more in the evenings. Stroke stuff is weird and individualized.

 

I sought doctors at a pain management part of a teaching hospital. They are full of experts. I am diagnosed with regional pain syndrome......a rose is a rose. So I have found a pain med coctail plus RFA with my spinal med helps me. Please google radio frequency ablation. I can never explain. But we all have different things and it is important to never armchair diagnose and be sure to seek out neurologists and pain management neurologists as Scott recommends. That is how I was diagnosed. Regular doctors were clueless. They still do not get it.

 

It is scary to have your body be so weird. I am sorry. But look at your luckiness and gift of survival.

Steve has put together really helpful information that is reliable. Thank you Steve. 

Even if it is not CPS please seek therapy and just relax knowing stroke stuff can be strange but there is always help when you seek information. So much is never heard about stroke and Steve put together this wonderful world of information and sharing. I rely on his every word about C P S. I have been pushing for the pump Steve that helps you. 

 

 

 

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Your  symptoms sound alot like mine but I would describe my left foot and ankle as being in a deep fryer. I was diagnosed with CPS 9 years ago. You need to see a neurologist. I which you the best.

KEN 

 

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