hey are you doing better now?

Hi Debi
I I am so sorry to hear that things have continued to worsen, and at a fast pace. It makes perfect sense that you would be having a hard time dealing with it. Your goals are so much like mine, and also so much for the benefit of your family rather than yourself, that I can really empathize. It is so difficult to adjust to not being able to be the perfect homemaker. Since I was a stay at home mom I felt that was my major contribution, and now I feel pretty worthless.

I am only able to stand long enough to cook, or to food shop, because of the pain medication. (MS Contin). Both activities take a toll. If I go to BJ's it is ironic that I come home with$200 worth of food and am too exhausted to cook any of it. That is a take out day. I have also had to simplify meals tremendously, I have a pampered chef covered baker that makes chicken breasts in the microwave and is a huge time and labor saver. My husband or son do most of the food shopping.

I have never considered a spinal cord stimulator, but my dentist, of all people, recommended a pain pump because I was grinding my teeth at night in pain. For now the pills are working well enough so I am not looking to make a change.

I am not able to houseclean, and I never will be. If I sweep and mop the floors I have pain in my hands and arms for days afterwards. Reaching into corners or tubs I fall over. I have a dear friend who cleans for me when I ask her (I do pay the going rate) unlike a cleaning service she does what I need and I don't have to clear up all the clutter first. I actually rested on my bed while she cleaned my bathroom and we chatted. When I had a regular cleaning lady I had to straighten everything up and get the whole family out of the house for the day, it was too stressful.

It bothers me tremendously that the house does not usually look very presentable. We have dogs which shed constantly, a shepherd and a pug, which makes it worse. I go into a mini frenzy when my son's girlfriend comes over, girls notice things more than guys, but there isn't much I can do besides make him vacuum. I burn a lot of candles!

I haven't been on the forums for a while, too much going on at home, fatigue levels much higher than usual. For me it is gradual, two steps back, one step forward. My daughter has been diagnosed with severe acquired scoliosis, at 30, after two babies. She had a clean EMG and I thought she was CMT free, but this seems suspicious to me. My biological sons both have it, but neither is likely to have children, one is engaged but slightly autistic with severe CMT symptoms and afraid of his genetics being passed down, the other has a girlfriend on meds which make it unlikely she would be able to have children.

I hope that you find relief soon. I believe that there is a medication or treatment out there that can give you some quality of life back. It seems cruel that you have to wait three months for an appointment.

Thanks for the update Susanne. Sounds like a very trying time for you. Take care.

First off I want to thank everyone who either replied to this thread or read it. I appreciate it very much What a great bunch

Susanne....thanks so much for sharing. I did not sleep at all last night. I helped my daughter in the kitchen last night finishing dinner and I knew not to do it but did anyway...stupid me. Even the pain med would not bring the pain down to a level where I could sleep. Hands, arms and the dang feet ! I was so mad I almost got up and posted a rant to SFN.....how dare it do this to my life ?

Being on my feet for any length of time is my enemy. I have every type of symptom you could name happen to my feet in a 24 hour period. Some days I can deal with it and some days I can't. I'm tired of not being able to do anything, can't clean, can't stand to cook, can't clean, can't go anywhere except the dr's and on and on....you all know the routine.

Worthless.....yep Susanne that's exactly how I feel.

My daughter, Bless her sweet heart, has been cooking for us and my mom every night for weeks. Either here or at her house....only one house between us now. My mom loves it but my husband isn't too thrilled with it. I'm very close to telling him if he doesn't like going to her house to eat then he can start cooking...something he has never done since we've been married.....I'm confident that he can cook......he's a smart man. I am so glad that your husband and son help you out.

And I'm right there with you on the pets too.....we have 2 small inside dogs and one 20 lb fat cat named "Bob". My husband rescued him and he was almost dead. He weighed about 5 lbs....an operation and 4 months later he weighted 22 lbs......that was about 7 years ago I would say my house is not presentable either......I'm sitting here looking at an A1 Sauce bottle that needs to be put up....good luck with that. May happen in a day or 2. Bob the cat has used the side of my couch....the side you see when you come in the door, as a scratching post and I don't even care.....I love that cat and can replace furniture but can't replace good old Bob ! My outside cat, Black Kitty, lol never named him.....sits on the kitchen window sill.....soon after I had my windows replaced he torn the screen up....all of it ! And I don't care about that either....I get so much pleasure walking into the kitchen and seeing him sitting in the window
Yep....light the candles before they get here...lol

Very sorry to hear about your daughter......I'm guessing it causes a lot of spinal pain ?

And I'm so glad to see you back....always love your posts.

I'm really going to try and stay away from an SCS...I don't even know if it works on SFN or not. The only pain mgmt. dr I saw was nice but just jumped on the SCS train when he saw my biopsy results.....0....nothing....no A & C fibers left or whatever happens to them. I do have PVC's (heart) and a friend says that might be a factor in me not getting one also. I know everyone has PVC's but mine got up to 33,000 in a 24 hour period.....every 3 heartbeat was a flip flop. Thank goodness I could not feel them. They did heart ablation and the # came down to 672 (weird that I can remember that) and then after chemo they are back up to approx. 7,000 as of last June. I really need to do the monitor thing again but will wait until I'm ready to have the ablation done again. Dr said it was coming. Wasn't the worst thing I've ever been through but I won't be rushing up to Emory anytime soon to have it done. I had to be fully awake. Any helpful meds for me would quiet my heart PVC's and they needed to see them to zap them....lol....burned 11 places in my heart that day

I'm going to try and lay down for awhile....getting that wozzy,haven't sleep feeling and the words on the screen are blurring

Take care sweet Susanne and please keep us posted.

Debi from Georgia

Thanks very much for the update Debi.

I have been told I have probable SFN with lots of hand and foot burning pain and pain from standing/ walking, I recently had a lignocaine infusion once a week for 3 weeks, this gave me about five weeks pain free it was heaven, unfortunately it's worn off now so I am back to sleepless nights, but apparently it can be effective for much longer for some people.

Hi Deb,

September is a while off to be in the kind of pain that you describe. I went to pain management and have the compound cream.

The compound crème is like a miracle. Today I hardly felt any Neuropathy symptom.

If you can make your pain management appointment and get the cream I highly recommend it.

Uglogirl aka Gloria

I am so sorry to hear of your pain. Has your neuro done any tests to confirm the SFN ? And what type of infusion did you have ? lignocaine....I don't recognize that name.

Sometimes I sleep all night long and then some and sometimes I don't sleep at all. I had someone on here recommend Ambien to help me sleep. It is by prescription. Maybe you can ask your dr about it or something similar.

If I stand too long or walk too much I pretty much have to hobble to a chair. That's why I'm home 99% of the time. I did manage to go to Home Depot last night and buy 3 plants for my yard....I've been wanting them for months....Even went out to dinner with my daughter and son-in-law....I'm paying for it today but it was well worth it.

Take care and please keep me posted on your treatment.

Debi from Georgia

I remember you saying you were getting some cream.....what's in it ?

I'm really putting a lot of faith in Emory....hope I'm not disappointed. I do know they have a pain mgmt. clinic and I'm guessing the neuro will refer me to them but I don't really know. Hopefully they will check me head to toe and ck all my blood work first.

I guess I'm in the mindset that nothing is really going to help get 'rid' of the pain since my dr's just shake their heads when they see my biopsy. Just about talked myself out of a SCS if they suggest one.

Thanks and I'll talk to you soon my friend

Debi from Georgia