Sjogrens Syndrome Pain

I'm a 45 year old male who up until 5-6 years ago was healthy as an Ox. I never went to the doctor unless I broke a bone which I did several times playing sports. It all started on day as an itch on my left foot. This itch progressed into tingling in both feet and numbness in feet and legs. Then the pain started. I have terrible pain in both legs (mostly below the knee) but my feet are the worst. Even the bones in my toes kill me. I went to my primary who referred me to a neurologist. After may tests and blood work. The doctors could not diagnose me. I finally made a decision to go to the Mayo Clinic or Johns Hopkins in Baltimore. After 2 visits and many more tests I was diagnosed with Sjogrens Syndrome with chronic neuropathy. My life has totally changed. I'm in pain everyday and I have had to go on disability which just is against all that I believe. I had a question that I can't seem to get the right answer. One of the big (out of wack markers) that the doctors are seeing is the protein levels in my spinal fluid are sky high. I can't remember the exact number somewhere in the 600's when the normal should be around 45. I have just went through Cytoxan and Rituxan (sorry for my spelling) chemotherapy to kill the B cells that are causing the inflammation (proteins) in my spinal fluid. I'm due to take another round of Rituxan this month but I have to get another spinal tap (#5) to see in the proteins in the spinal fluid have gone down. HAS ANYONE BEEN THROUGH THIS BEFORE AND ARE THERE ANY ALTERNATIVES IF THIS CHEMOTHERAPY DOES NOT WORK FOR ME? JUST TO NOTE I HAVE TAKEN IVIG AND STEROIDS WITHOUT SUCCESS.  ANY SUGGESTIONS WOULD BE APPRECIATED. IF ANYONE NEEDS ADDITIONAL INFORMATION I CAN PROVIDE THAT. I APPRECIATE YOUR TIME AND POTENTIAL COMMENTS.

[selmaS]

Hi...I am so sorry for ur frustration and for ur pain...I know it is not easy living with pain and to have to stop working....not something I planned either...I wanted to work until I retired....but as I tell my DD we must be willows not oaks or we will break in the winds of change....

I wish I knew more about this condition and all that u r going thru...I would advise u to try the  expert forum as the Drs in there may be better able to answer ur question....keep in mind, most answers r general and since we are all different they can not really advise u on ur health matters, but may be able to suggest something to bring up to ur drs.

The best of luck and do post updates on ur progress <3

[billymoss]

Thanks Selma: I did send a post to the doctors on this forum. I'm waiting for a reply. Yeah it gets pretty tough sometimes. I just try to stay positive and try not to make (the pain) the focal point of my day. I'm not obsessed with finding a cure (because quite frankly I believe this is the hand God has dealt me). But I do try to stay up on all neuropathy research and things out there to help with pain control. Right now it has to be the meds. I also try using my mind to control the pain. I have a huge respect for people who can control pain like that. I try so hard but. I get to a certain point and cannot get any further with trying to block it out. My wife (who is a nurse) is totally supportive and want's me to stay home from work and have some quality of life. It just gets tough for someone who has worked hard all their life. i'm learning to deal with it though. I have only been out of work for about 7-8 months so it might take some time for me to understand this will be my life (for now). I will always try to beat this thing and figure out why it happened to me. But in the same breath I have to enjoy my life the best way possible and try to smile everyday for what I do have. Which is a great deal. Thanks for your comments. Just hearing them makes me feel good. You take care and have a wonderful day. Thanks again.

[selmaS]

  I hope u continue to post  updates on ur progress and u may be able to help others with this condition....

  FInd a hobby u can do at home such as painting ....I find it enjoyable and relaxing....who knows u may find a way to gain an income too !!

[billymoss]

Thanks Selma. Its funny you say that. I have been looking for something to do at home that can produce a bit of income. I have always worked hard my whole life. This staying at home is pretty tough. I read a lot of books right now just because i enjoy it.  Maybe finding something a little more involved though enjoyable will take my mind off the pain. This morning is especially difficult. It seems that mornings and evenings are the worst for me. Plus I live in Pa and the winter weather is starting to set in. I don't believe the cold helps any. Thanks for you note I do appreciate it. You have a wonderful weekend!

[selmaS]

  I am also in PA so I know how the weather affects pain....it makes me hurt more...I went out yesterday and could not get warm last night.....ugh

So, today I will stay in and bake a little and sew a little and try to make a few gifts for the holidays....

Hang in there : )

[billymoss]

Sorry about that Selma. I know the feeling the last few weeks for me have been pretty bad. I have also developed tremors in my hands and legs. I twitch all the time. Its a pain to type and use the phone. Does not hurt just annoying. i said a prayer last night (one of many) that all of this stuff just stop. I hope the Lord is listening. It just gets so tiresome. Most of my energy in a day goes to fighting the symptoms of this disease. I wish I knew how to combat this better and why it all started. Some days I accept my situation but others I don't and try like crazy to find out what I can do to better my situation. Its just seems like a long vicious circle that never ends. I'm only 45 and sitting at home most days just kills me. I only get about 4-5  good hours a day now. Then the pain sets back in and it gets tough until the next morning. Sorry to throw this all at you but I just needed to vent to someone. I hope you don't mind too much. I really do try and stay positive most of the time and I never complain around my wife and children. I want them to know that I'm still strong for them.  This is the 1st time I have wrote anything like this. It feels a little bit more comfortable telling someone who goes through some of the same things I do on a daily basis. Thanks for listening to me rant. I do appreciate it. Have a great day. if I don't talk to you have a wonderful Thanksgiving with your family. All the Best...Bill.

[selmaS]

  U can come here and Vent nething and as much as u need to that is y this forum is here.....and I certainly do understand....u may not have the exact  same condition, but I feel we are similiarily affected by what we do have.

We hate to keep telling our family how we feel bcuz to them we "look fine"...it is many times the invisible issues that r harder to deal with..if I had a cast it would be easier for family and friends to understand....when I had surgery and my hair was shaved and they could see my scar then it hit them...this is not  just her not wanting to do things, this is real....

It can hurt when they do not get it, but I remind myself there are many neurosurgeons that don't so how can I expect them to?...

SO we trudge forward, and do our best...and use this forum to share how we really feel,and know the other person really understands.

Hang in there Billy and have a wonderful Holiday with ur family <3

[billymoss]

Thanks Selma. You do the same. I'm looking forward to Thanksgiving Day. I'm spending it at the fathers with the family. It will be nice. Its the first time we have went to my Dad's house so I'm pretty excited. Before all this stuff happened to me I hosted "Turkey". Cooking used to be my thing. I still cook but not like I used to. I used to have a gourmet meal on the table every weekend..ha..ha!! I ordered 2 pies from a bakery by my house to take with me. My dad likes chocolate so I got a chocolate cream pie and also a pecan pie. I lived in the south for like 10 years and got addicted to pecan and sweet potato pie. My grandmother used to make pecan pie from scratch. To this day I cannot find anyone who can touch her pies and homemade crust. Every time the holidays come around I think of her pies. I have tried to duplicate the recipes but I never come close. She did everything from memory. Boy I sure do miss her (and those pies).

Thanksgiving is my 2nd favorite day of the year. Christmas Eve is my favorite. I think because I used to get so excited building all those toys for my kids and had to wait to see their faces the next day when Santa had left all those gifts for them. They are 20 and 17 now so its not the same but I still love the anticipation of them coming down the stairs on Christmas morning looking at all the gifts under our tree. Those are the days that make it all worth it. You take care and again thank you so much for lending a compassionate ear for me. Happy Holiday..!!!!!

[selmaS]

  Thank u Billy....I am just resting from  doing some baking....today was pumpkin rolls...I made the bread pudding yesterday and tomorrow I will make pumpkin pie and coconut custard pies....I have to do a little each day to get it done....my DD will be here to help tomorrow.....yea...cuz I am not sure I have it in me to do the rest....

My DH makes the big meals around here has for yrs since I never had the energy to do it.,...it works out, he seems to enjoy it and he is good at it...I like to cook too, but, it is way too much all at once....lol...

Enjoy seeing ur dad, and those pies...they sound yummy.....

Well my DD will be 28 on the 6th of Dec. and I still enjoy her face when she opens her gifts Christmas morn....and this yr is the first for her puppy,. so that will be something in itself....lol....

We had fun with her at Easter....had  Bunny ears on her...lol...she loved her Basket so I know she will love her stocking...

BTW- when u tried to make ur Grannies pies, did u  use lard, it is a secret to the best crust ever,....