[Billylyne5]

Title says it all 😔
My white blood count has dropped my dr thinks because of the cambazapine so I've started to reduce the dose on her advice, as a low white count is potentially dangerous, I am trying to avoid being in contact with people who have colds but it's a nightmare.

I am in so much pain at the moment, my feet hurt to walk, my arms ache so badly, my ankles and wrists are stiff and painful etc etc
I just needed to have a moan somewhere as I usually just keep things to myself.
This SNF is proper poo!!!

[hopeful]

I hear you! I've been in a bad flare for two weeks now! I agree SFN is proper Poo but that is too polite a description for it. You are not alone. Feel free to moan whenever you want. Nobody here minds.

I'm sure having to stay away from people only adds to the problem. When I can't get out I always feel worse. If you like any of theses ideas try them, reading, meditation, listening to music.

I will pray for u that things get better. Hopefully, the doctor will be able to find another alternative for you to take.

[IllPn]

I hate winter as more symptoms hit me. Toes going numb -more than just a couple at night now. I stopped supplements and wish I had not! I am doing searches now to see if the neck has anything to do with that as have problems there but likely the neuropathy. I have had more burning on the foot and top of foot and tingling up to the knees too.

[St George 2013]

You are so right ...... this SFN stinks !

I am so sorry for everything you are having to go through. This has been the biggest challenge of my life. I'm only 52 and this just hit last May so I know the road is long and will have many twists and turns.

The cold is my friend and I am so glad it's here. My porch is terracotta and to walk out there and just....stand....is heaven for my feet

This is the first morning I've been up and stayed up in months. I actually have felt good the last few days. It is so much easier to deal with the pain when I actually feel good in my head.

Wishing you some better days real soon.

Take care

Debi from Georgia

[Billylyne5]

Thank you for your supportive replies, I have been struggling with this for a year now, and at 43 with a career and three kids plus a hubby I do struggle, I am a cup half full person but I am struggling with this, my neurologist is a bit vague and has described this as a working diagnosis so I always have an element of doubt about what is wrong with me
Is is normal for the symptoms to go through periods of being better or worse? A few weeks ago I was feeling so much better, but now I am really in much more pain, like a flare up I suppose. Sleep is what I need most and it's then that I am in so much pain 😓

[baba222]

Originally Posted by Billylyne5

Thank you for your supportive replies, I have been struggling with this for a year now, and at 43 with a career and three kids plus a hubby I do struggle, I am a cup half full person but I am struggling with this, my neurologist is a bit vague and has described this as a working diagnosis so I always have an element of doubt about what is wrong with me
Is is normal for the symptoms to go through periods of being better or worse? A few weeks ago I was feeling so much better, but now I am really in much more pain, like a flare up I suppose. Sleep is what I need most and it's then that I am in so much pain 😓

Hope it gets better soon.

[hopeful]

Originally Posted by Billylyne5

Thank you for your supportive replies, I have been struggling with this for a year now, and at 43 with a career and three kids plus a hubby I do struggle, I am a cup half full person but I am struggling with this, my neurologist is a bit vague and has described this as a working diagnosis so I always have an element of doubt about what is wrong with me
Is is normal for the symptoms to go through periods of being better or worse? A few weeks ago I was feeling so much better, but now I am really in much more pain, like a flare up I suppose. Sleep is what I need most and it's then that I am in so much pain 😓

It is normal to feel better and then have periods where your pain gets bad again. I call them flare ups ( I'm in one right now). I have yet to be able to connect anything to these flares.

Many people have been able to figure out triggers though. Certain foods can cause flares for some people. I've heard night shade vegetables, rice, tomatoe sauce.

I'm sure this must be so difficult for you. I was 48 when this started. Thank goodness all my kids were grown.

I also am usually a cup half full person. However, I do have periods where I get depressed about this. I just try to not allow those times to last.

I don't know how old your children are but be honest about what is going on with them and your husband. TAKE the help they give you. Before I left work two years ago I basically went to work and did little else after that. Give yourself as many breaks as possible.

Hopefully, someone who has managed to figure out what causes their flares will be able to tell you more.

Hang in there

[H1N1Guy]

It is very tough. I am 32 now one was diagnosed when I was only 28. I fear for what my life will be like in the future. I feel so bad for my family having to put up with me. I wish you the best.

[zkrp01]

Hi Billie, Sometimes you just have to get through the next minute, then the next. I find when I cannot remain still, I get up on the bed and do things that would not be cool for a U-Tube video,haha. I will get into a doggy position and ty to concentrate on stretches for hamstrings, lazymans yoga if you will. Then rollover try something else.Your own body will give you the parameters for what you can stand. All avenues that are suggested, Music, TV, anything that works for you. Avoid external stresses, avoid inflamatory foods.Try self-massage and a heaping dose of self-pity. Do not let a temporary condition drive you toward depression.You have to make do until you and your Dr. can come up w/ a better plan. There are those that seek the ER if nothing else works. I was helped along for over 6 months by a Chiropractor. I have not tried Accupuncture, but that is a card in the deck also. Wishing you strength, Ken in Texas. P.S. Ask your Dr. to get you some generic Ambien to take until better plan is in place. Sleep is fundamental.

[St George 2013]

Just wanted to see how you're doing.

Hope you've had some good days since your last post

Debi from Georgia