fire bursts electricity in upper back????

[irish]

Anyone have neuropathy in hands and arms with numbness, burning and decreased feeling but yet pain??? How about bursts of electricity in back that go down arms and some into sides of face? Painful.
I also have pain in right leg/hip of ? origin that seems to be nerve pain. Hard to walk, Saw neuro on Wed and am scheduled for appt with my neuro next Thursday when I get back from my infusion. Then MRI's on Friday and the next week EMG.

The last Month has been miserable.....heck the last 4 months have been miserable. Finally talked immunologist into starting me on cellcept last Friday. We will see what happens with that. I have been in my house almost 2 years and still not settled. Kitchen remodeled and bathroom to be remodeled and then I want to put my house up for sale and get help sorting through things. I need to get out of here. Nicxe house but is not meeting my needs and just too much work for me. Taking care of sick hubby and not paying attention to myself resulted in me not knowing just how much I had slipped health wise. Should have moved into an apartment right off. So think hard when you make a move and save yourself some misery. A lesson from Irish

I have my name on list at a coop that is really nice and a good price but not in town I want. I called and talked with a gal I worked with at assisted living and found out the price for their independent apartments. They are small but in town and I can take a hired transportation to doc if I can't drive out of town. Also, can add any services I need for a price of course. Living here would be almost like being at home cause I loved working here and the owners and staff are so great.

For all of you going through this phase of life, hang in there. It is really tough to have to give up our possessions, but heavens knows, I don't cook much or bake. Never, ever, give up the computer though. Hate to say it but in these times it is our way to the rest of the outside world. Still have to keep on keeping on....and it really isn't that much fun, but it is necessary. Hugs a;;/ Irish

[Joe S.]

(((Hugs))) I am glad that you can continue to talk to us. My mom went through a similar situation before she died. It was very hard for her to move into assisted living. Having to drag her O2 where ever she went made things extremely difficult for her. She ended up in palliative care when she came back from the hospital after a blocked bowel. I was glad for her that she went quickly. Please keep smiling, it scares the heck out of others. (Its that month).

[irish]

I am not close to dying Joe....at least not that I know of. I am just weaker and have lost the push that I used to have. I need some place that is smaller with nothing to have to be responsible for. I don't want to put nore money in the house such as roof, siding, etc plus with all the heavy rains in MN the worry about a flooded basement is something I would not be able to handle and would have to get the kids. Neither the kids or I need that.

I also need to be some place that I can get more socialization without having to get in the car and go away all the time. My fatigue level is such that I wear out fast. I am getting very close to giving up the trip to the immunologist and my kids once a month. I can do the infusion closer to home. The trip is wearing me out the past year...the past 5 months have really been hard on me as it takes me a week to recover. I have even had to stop in towns and set the alarm on my phone and take a little nap as I get so worn out.

Also the one apartment is 2 bedrooms with a garage and is in a 57 apartment complex. It is the same asd living in a house except no responsibility. They collect garbage outside our doors twice a week, collect cans and bottles and the apartment coop has a car and 3 days a week will take people anywhere they want to o including the doctors for free. Just call when we are done and they come and get us. The assisted living complex where I had worked has about 24 apartments that are independent and have garages also. They are on one end of the facility and the assisted living is on the other side. One block away they have a memory unit. They have planned very well as far as the care of the older residents. Our town is lucky to have them. I have signed up for them and can remove my name if I change my name. The waiting lists are long.

If the cellcept helps me I will be better and enjoy life more. Otherwise to live somewhere that is closer to people will make a huge difference in my life. Thanks for caring. Irish

[angeldancer]

Irish,

I am so sorry that all of this has taken a huge toll on you.  Your grace has been a staple here and your knowledge is bountiful.  I pray that the celicept works.  I also pray that the fatigue decreases so you can have days where you can just relax and so what you desire. I think now is the time for  you to do whatever you desire.  I am looking into moving into a senior environment because I know I need to be around other people that I can relate to.

I am proud of your tenacity and grace and pray that I have learned enough from you to be the best me that I can never looking back but pressing forward to what needs to be done.

As far as electricity in your upper back, I have it also but I am still at the stage where the doctors believe its in my head and are doing nothing to help me find out whats going on.  They just say "its the sjogrens". 

I thank you from all of us,
Angeldancer

[Joe S.]

The apartment that my moved into was a one bed room where she could reach everything from her leash (O2). The mistake she made was to have them deliver her food so she did not socialize. She was very social. In fact she had been a social worker in MN. She had a post grad degree in psychology.

At the time of her move, she asked me not to save her again. (I had done it 3 times before). So she was ready to leave and you are definitely not at her stage. Personally I would opt for the interaction with others. 

[lorigacc]

 I know these changes are not easy, but they are the smart thing to do....and being smart and always looking on the positive side, is why you are an inspiration to me and many others on this forum.  You have been through difficult times, but stay strong and pass those life lessons on to all of us.  Surround yourself with the things you love, be good to yourself...and this too shall pass...

Hugs to you too

[Kathy57]

Irish,

As usual you sound like you have a real understanding and a good handle on things.  I think the apartment in your city sounds very nice.

I would also like to thank you for all your wonderful support and advice to all of us here.  Your support is truly a labor of love.

I?m so sorry that you are feeling poorly and I hope the cellcept will help.  I?m currently going through a flare.  I finished ten days of antibiotics but I felt so fatigued and inflamed.  Lots of brain fog and my asthma was really kicking into high gear.

So, I broke out my magic methylprednisolone dose pack and started taking it Thursday morning.  I feel much better already and that?s how I know this is a flare and much more than just a sinus/ bronchitis infection.  I hope this prednisone type med will kick me out of this flare.  If not, I?ll feel good while I?m on it👌😊.

Hang in there, Irish because we love you and also we all NEED you!

Kathy

[irish]

I have to thank all of you for your nice replys.

One thing I noticed is there isn't one person that is feeling half way decent. I think that we are all in flares. Make me wonder if the weather change is bringing it or what. I hope all of you get to feeling better too. We all want to have a good holiday season. Thanks you and Many hugs.Irish

[Carolina]

Dearest Irish,

I have already visited several facilities in our area, with several levels of care.  If it were just me, I would go directly into the assisted living part of the one facility I like best.  But my husband is never going to accept leaving our house.  I think aging is so much harder for men to accept.  I am 75 and he is 78.

He provides me with care (help in dressing and putting on my braces, fixing all the meals, doing all the food shopping, etc.), especially now that I have fractured my spine in a fall on October 8.  I thought I knew how dire my level of mobility was before the fractured spine and the accompanying pain.  Just when you think it's as bad as it gets, it gets worse!

My husband is in the process of putting in an accessible shower, but at 78 this work is beginning to be beyond his stamina level.   Both of our sons are helping him.  Our older son who lives in Paris is here and he has put in/remodeled 10 bathrooms, 4 in his own house.   So he is really great help at both the decision making level (design) and at the practical level (doing the work).  But he leaves on Tuesday, so what is left (most of the work) will fall to my husband.

My husband's parents stayed in their own home until his mother had a stroke and could no longer do the 'heavy lifting' of daily life.  His father was suffering from severe osteoarthritis and Parkinson's.  He didn't want to go into a nursing home, but couldn't live alone, of course, so both of them made that move, but in their middle 80's! 

The hardest thing about all of this (my condition before my fall, and for the past two weeks) is that I just can't 'do' anything.  And now I stay flat on my back most of the time hoping the fracture pain will subside soon.   It seems the horrible pain (brought on my movement) happens less often, so I am ever optimistic.

But I am always one more fall away from disaster.   

And my current medication (Amitriptyline) for the pain of my OA isn't working nearly as well as Cymbalta, which caused me myoclonus  (jerking) and syncope (collapsing to the floor suddenly). I think the reason I fell and fractured my spine is that the Amitriptyline actually makes me groggy and less steady on my feet.

But, dearest Irish, you know all about mixing and matching medications and treatments.   I am actually also tired of trying to find what works when what worked best is no longer an option.

Talk about the rock and the hard place. 

Keep us posted.

Regards, Elaine

[Deb 27]

Irish, sorry your last 4 months have been painful. Sometimes we get to an age where we need to downsize so we can feel better. Only you know what will make you comfortable. I am retiring early due to health reasons in 5 months. These AI diseases take their toll on us but we are still here!!!

I suspect that I've had some neuropathic pain in my hands and arms. Going for my 6 months check up next week. We'll see what the NP says. Regardless, there isn't a lot that I can take for pain or sleep as they make me too groggy and forgetful the next day.

I hope the Cellcept works for you.  Keeping my fingers crossed for you!  Thanks for always being here for the rest of us!

[SjoGirl]

Oh Irish, yes, been there. Odd isn't it that you might not feel something cut you (I've been down that path, been bleeding and didn't even realize that I had been cut) but experience nerve pain. I had to go off of Gabapentin and the pain is returning along with a host of other symptoms that it seemed to address.

I hope that your docs can help and will be praying for you!

[Kristian]

Irish,

I too get the burning and numbness. Mine is more in my low back and legs, but also has been in my neck/arms/hands and head/face. How I had it explained to me is that the Sjogren's is causing inflammation in my nerves, more specifically my spinal nerves for the leg and arm pain and numbness.  The inflammation can take me to searing pain down my leg with my foot going numb at the same time.  The nerve is getting so inflamed it is squishing itself and cutting off flow for the numbness.  Neurontin helps significantly, another option is medical marijuana (more specifically CBD) can help lessen the shock /searing sensation.  I refer to it as electric lava, best I can describe to anyone.

Mine makes me unable to walk when it acts up, literally like flipping a switch and turning the legs off. neck and hands has improved lately, same with the head shocks.

Hope it is just a flare for you an d calms back down soon. :-)


If you take any of the biologics they seem to help a lot, I just started on Humira about 2 months ago and have seen a noticeable improvement.  It will take 6 months for full benefits to build up so doctor and I are very optimistic.

Hope this helps a little bit, if only because someone else is in the same situation.