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?

Sending you a happy hug; I'm sorry that you are having a bad day....

I just need to comment on something you said...as you muscles are wasting and 'people' say oh that's lack of exercise....I have to agree with YOU. No it isn't;
I have CRPS 2 and spreading....some pain is in my arm and holding it a certain way helps me cope...a doctor told me doing so with cause my muscles to waste away and stop it....
I move around a lot; and yes it feels like crap in the legs....so kudos to you my friend. Keep up the fight....

When the motor nerves are affected by neuropathy you get weakness and often atrophy. The muscles are no longer getting the message from the nerve to fire .So no matter how much you try to make that muscle work---it won't.. It is not because of a lack of exercise.
Most of us look perfectly normal, making it difficult for others to understand this.

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.

I hope that you can gain some hope in this message as you may well have to "soldier on". Ken in Texas.[/QUOTE]

Hi Enna/Ken,

Thankyou for your messages. I've considered CRPS, the entire length of my legs are affected as is my spine my neck, everything. I know I have no choice but to accept this and keep going. I just cant believe I have got to the stage where I am going to go and have to ask for mobility support.

Is it possible to have a happy fulfilling life with joy and achievement once mobility is lost and pain is an ever present factor? I see no future and fear my son will resent me as he grows because I am less able to do all the things with him he wants.

Ken, your message is encouraging. The problem is not knowing exactly what is going on and where the pain/ damage is and why. It feels like more than the sfn. Because I dont know exactly whats going on mechanically within my legs, I dont know whether to rest, push through it, move, not move. Its getting worse daily. I'm so frightened. It seems those around me are distancing themselves from me, like they cant deal with it or dont want to. I dont whine or cry on anyone, I laugh and joke most the time. You can see that Im struggling though and things are going downhill rapidly.

Ken,

Great to hear things are going well. That is great. Hard day here, too. Called in, got a few hours of sleep in a row (glorious) muscle cramp, back down and a bit more. Rest is great, though I agree the pushing is important.

I am having increasing symptoms despite a vegan diet, for me insane glycemic control and sloughing off a quarter of my body mass.

I have high hopes for my continued efforts paying off, recognizing that may not be. I understand people like to maintain a positive view point, I agree. But I like the big sky view, not just searching for rainbows.

I stretch daily, light exercise.

Best Wishes

Hi Enna/Ken,

Thankyou for your messages. I've considered CRPS, the entire length of my legs are affected as is my spine my neck, everything. I know I have no choice but to accept this and keep going. I just cant believe I have got to the stage where I am going to go and have to ask for mobility support.

Is it possible to have a happy fulfilling life with joy and achievement once mobility is lost and pain is an ever present factor? I see no future and fear my son will resent me as he grows because I am less able to do all the things with him he wants.

Ken, your message is encouraging. The problem is not knowing exactly what is going on and where the pain/ damage is and why. It feels like more than the sfn. Because I dont know exactly whats going on mechanically within my legs, I dont know whether to rest, push through it, move, not move. Its getting worse daily. I'm so frightened. It seems those around me are distancing themselves from me, like they cant deal with it or dont want to. I dont whine or cry on anyone, I laugh and joke most the time. You can see that Im struggling though and things are going downhill rapidly.[/QUOTE] When I quit Hydrocodone I could feel the range of motion tighten up. I am stiffer now but not as medicated. Those meds only available thru PM now. My life became better immediately. Are you in PM? Fulfilling life possible? If you lose a loved one are you good to go the next day? No. Grieve for your loss. Many here have wailed and gnashed teeth but after you deal with the loss you can lift your head and tell your son that you love him and you are going to try to be there for him. I don't think kids need moms to play beach volleyball. If you are seen trying and struggling, your family will know you are in a fight. A FIGHT! Good Luck, Ken in Texas.

Hi Joanna,

Me again. I feel so sad reading your posts-as I truly can relate as can many here. I also have more than one illness-I have a long history of Lyme disease (when I was 10 years old), autoimmune Addison's Disease, as well as hypothyroidism. The neuropathy is new in the past year.

If I remember correctly-AS often starts in the sacroiliac joint. Was that the case for you? The SI joint has many nerves that run through it-nerves that control the muscles in the legs. Anything irritating those nerves can cause your gait to change, even if you don't realize it is happening. I have a hypermobile SI joint_hear it click in and out of place alllll the time. Because of this, I get some strange leg issues. Is it possible you have any sort of compression happening in this joint?

Hi Ellsac, thankyou for your replies :-). Yes, that's exactly where it started and my sacroillac area has evident bony changes within due to continued inflammation. My neuropathy has begun as
A small fibre type but I agree that the gait issues could be greatly affected by that. It's all a bit confusing when you have alot of health weirdness, as you will understand from experience. I'm sorry you have to deal with a number of problems. I wonder if the Lymetriggered all your other issues. Autoimmunity is such an awful predicament, I don'tyet get why more iisn't being done to understand and treat these issues better.
Since writing, I went and saw a sports masseur who did some deep kneading and stretching of muscles round the knee area. It has thankfully addressed the stiff immobility issue massively, i really hope it lasts. Still have all my other probs but that was a nice relief. :-)

Glad the muscles have been doing better. I can certainly relate to all of what you're dealing with, and the uncertainty of knowing what is being caused by what! It can be so annoying.

My docs think it is a very real possibility that the bad Lyme infection set me up for autoimmune troubles later in life. I plan on starting a strict diet program once we move (in the middle of buying a house). I've been stressed from the house buying...and that isn't helping. It has caused old IBS issues to act up (which makes me fear it is autonomic neuropathy and not just an IBS flare from stress), reflux to act up, pain in general. I look forward to being able to settle in and reboot my diet and hopefully fitness.