Quote:
Originally Posted by JoannaP79
Hi all,
I am sorry to be negative but I have spent all day in tears and I don't know how to cope with what is happening. I have had awful problems with SFN in my legs and I am now having real problems with my knees. I know
spondylitis (which I also have) can affect your knees but it feels like this could be part of the neuropathy. It feels deeper than the skin, like it is deep within every part of my legs into the bone and through all the muscles. My knees are so stiff and feel tight and heavy and I feel like I cant bend them. They are clicking alot (every part of me is clicking when I move tbh). I feel like I have no strength left in my knees and darent lift anything anymore. I have been shuffling about the past week and trying to hide it from my little son. I have spent alot of time sat down as Im scared to walk on them and feel like I am going to really damage my knees by walking. I just cant figure out which pain is which anymore. I am becoming so depressed by this all. I keep trying to soldier on and then I get knocked back down again.
Does neuropathy affect your legs like this? Is this what it sometimes means
when people with neuropathy struggle to walk? The pain is a problem but it is more that it feels they are going to give out or snap almost. My legs have shrunk alot since this started, almost in height and width. Yet the rest of me hasnt with it. Everyone I mention this to says its just lack of excercise. It isnt that at all, I know that. I am so distressed beyond words with what is happening and how rapidly this is happening. No one can tell me exactly what is happening with my legs, I feel I am losing them or that I will be in a wheelchair within months. I am 35 and have a little son to look after on my own so this truly devastates me. My family are not a great help. I really dont know how I am going to cope with this. I feel like my large fibres might now be involved. How do you know if that's the case?
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Joanna, I have been trying to tell me Dr that I had two different sets of pain, one displays as burning,zapping. tenderness, partial numbness. The other is deep muscle pain in Lumbar,hips, knees. I was first DX w/PN and told to go lose weight. Another Neuro said Amyotrophy plus PN. The Amyotrophy includes an acute phase where you go down pretty fast. Seems like it was about six months for my wasting to stop and start reversing. I started falling and had to use a walker. The sense of loss is maddening. Also the frustration that physical therapy does not speed up recovery. I have been improving for about six months now and can attest that recovery is regulated by something other than physical exertion. The strength is coming back and I have been leaving the walker in the back of my truck. My knees still get very stiff and I walk with a side to side rock. Using a spin bike helps them unlock. I used the exercise to tolerance mantra for two years now since I was in a car crash that inflicted trauma to knee or spine. Nothing that shows on x-ray or Mylagram. You can search here for Amyotrophy or double-crush syndrome and get more info. I was terrified that a wheelchair was in my future but a combination of higher b-12, excersise to tolerance, nitrient-dense foods and time passing is getting the job done. If you still get weaker, don't fear the walker. It will allow you to function safely. I was almost run over in a fast food drive thru when I fell trying to negotiate a two inch step-up. I hope that you can gain some hope in this message as you may well have to "soldier on". Ken in Texas.