The Lupus Forum banner
1 - 10 of 10 Posts

·
Registered
Joined
·
317 Posts
Discussion Starter · #1 · (Edited)
I haven't been here in about 2 years. Having to find my way
around again. Didn't have computer for a while and trying to navigate
the site on my phone was a nightmare.

Anyway... I have mostly been doing OK. Symptoms have lessened. I do have alot of skin
issues, dry eyes and hair loss but aches and pains have been well controlled
and life was going on. December 10- 2019 I had knee replacement. Years of arthritis
had erased cartilage and the ends of bones were chipping away. I had lost about
and inch and a half in length of the leg.

About 8 months ago I started getting mild muscle twitches. They advanced to strong spasms.
Around face and neck at first. Later shoulders and arms. Then chest muscle and back.
It hasn't spread any further down in about 3 months. The spasms can lock my arms
or neck in one position. And the worst can bend my back backwards until I am looking
at the ceiling. In February I was diagnosed with dystonia. right now I have my
PCP and Orthopedic doctor. Neither can give me a definite cause. They both say stress,
trauma and immune issues can contribute to development of dystonia. No connection to SLE
has been found. No real test for it. Follow symptoms and when all else is ruled out they
call it dystonia.

I was given a round of steroids that helped but since have gained 18 pounds. A blow
after losing 50 pounds prior to my knee replacement. Then a muscle relaxer. It controls
spasms but makes my joints ache to the point I rather spasm. I have some small spasms
daily with maybe 2 days a week that they are bad enough to stop me from functioning.
My recliner has a permanent print of my butt. It is formed to me.

The next treatment choice is Botox. Neither doctor recommends it because of allergies I
have and a record of not tolerating alot of medicines I have been given over the years.
So I use Zanaflex at night to calm the spasms. An just deal with them through the day. The
other muscle relaxer I had to stop taking doesn't make me sleepy and I can do things
around the house and drive. Zanaflex lets me sleep and get to about noon. But i can't
drive and take it. So if I have to go somewhere it has to be early.

just wondering if any fellow Lupus warriors have dystonia and if so what has helped ?
 

·
Moderator
Joined
·
4,438 Posts
I am so sorry to hear of your terrible time with ?dystonia. This site is so much quieter than it used to be so it may not be easy finding somebody that has experienced this. I do however send you my best wishes and hope there is a way forward for you to get a better quality of life. Take care and keep plodding on.......Claire
 

·
Administrator
Joined
·
10,196 Posts
Hi Sounds,

The neurological side of my Lupus has been progressing so now what was milder muscle cramping before has been diagnosed as dystonia. The meds I have tried work for a short time and then are no longer effective. Stretching out the muscles can help but I don't know how to stretch a few of the places it has happened recently. Trying to relax the muscles around the area can make it less painful. My go to though is applying heat. The heat helps the muscles relax and the position I am stuck in will finally let go. I found getting upset only makes things worse. I tighten up more and it expands the area of cramping so heat and controlled breathing are my go to. Once a cramp lets go I continue to relax or it will go right back into the stuck position.

I wish I could offer more suggestions to help you but so far haven't found any. I will contact you if I do find something. In the meantime you might keep track of some of the studies being done.

Take care,
Lazylegs
 

·
Registered
Joined
·
421 Posts
I get cramps in my feet, hands, calf muscles and back. Nothing has been done yet. Have burning mouth and body in Surtain places but just told I had a virus. Don’t know if they are connected. Things happen but don’t know if it comes from Lupus or not. Good luck.
keep safe
Wolf1
 

·
Registered
Joined
·
317 Posts
Discussion Starter · #5 ·
I am so sorry to hear of your terrible time with ?dystonia. This site is so much quieter than it used to be so it may not be easy finding somebody that has experienced this. I do however send you my best wishes and hope there is a way forward for you to get a better quality of life. Take care and keep plodding on.......Claire
Thank you.
 

·
Registered
Joined
·
317 Posts
Discussion Starter · #6 ·
Hi Sounds,

The neurological side of my Lupus has been progressing so now what was milder muscle cramping before has been diagnosed as dystonia. The meds I have tried work for a short time and then are no longer effective. Stretching out the muscles can help but I don't know how to stretch a few of the places it has happened recently. Trying to relax the muscles around the area can make it less painful. My go to though is applying heat. The heat helps the muscles relax and the position I am stuck in will finally let go. I found getting upset only makes things worse. I tighten up more and it expands the area of cramping so heat and controlled breathing are my go to. Once a cramp lets go I continue to relax or it will go right back into the stuck position.

I wish I could offer more suggestions to help you but so far haven't found any. I will contact you if I do find something. In the meantime you might keep track of some of the studies being done.

Take care,
Lazylegs
Thank you. I have found that hot shower eases the muscles in my back. An my lamaze breathing has come in handy to. I started going to it almost instinctively. I have also been using my TENS/EMS unit. It helps some. Meds help very little. The one that works best ( Robaxin) for muscles makes my joints ache. I have been doing good as far as issues associated with lupus. This has blindsided me. The spasms I'm getting from point of shoulder to neck I cannot do anything but wait out. I'm worried it will start effecting swallowing. I will occasionally asperate after a spell involving my neck. I swallow and what ever I swallow only goes part way down. Especially liquids.
Thank you for your response
 

·
Registered
Joined
·
317 Posts
Discussion Starter · #7 ·
I get cramps in my feet, hands, calf muscles and back. Nothing has been done yet. Have burning mouth and body in Surtain places but just told I had a virus. Don’t know if they are connected. Things happen but don’t know if it comes from Lupus or not. Good luck.
keep safe
Wolf1
I have been told it's aging, a virus, ect ect. Finally keeping journal and how often and severity of episodes and taking a secret weapon in with me got more attention. Secret weapon is my 22 year old daughter who is an RN and still living at home. And I had been going to my ortho because he does sports medicine involving muscles and joints. He kinda dismissed what I was telling him.
When I went dragging my daughter along to PCP and gave him all that other doctor had said to me or done, along with my record and Sarah's observations he took it more serious than ortho. Still no real answer and continuing to try to find something that helps. I was odd watching my doctor and daughter take professionally. He delivered her.
I hope you find relief for your symptoms. Take care
 
  • Like
Reactions: wolf1

·
Administrator
Joined
·
10,196 Posts
Thank you. I have found that hot shower eases the muscles in my back. An my lamaze breathing has come in handy to. I started going to it almost instinctively. I have also been using my TENS/EMS unit. It helps some. Meds help very little. The one that works best ( Robaxin) for muscles makes my joints ache. I have been doing good as far as issues associated with lupus. This has blindsided me. The spasms I'm getting from point of shoulder to neck I cannot do anything but wait out. I'm worried it will start effecting swallowing. I will occasionally asperate after a spell involving my neck. I swallow and what ever I swallow only goes part way down. Especially liquids.
Thank you for your response
That sounds scary. I suggest you keep your phone nearby in case you need help.
I have been fortunate not to have any swallowing issues. Mine is more disfiguring. An example would be one finger up at an angle, another down while another is curled under. How long it lasts changes each time.
I tried the Tens but it didn't do anything. I am thinking it may be I am not getting it at the start of the cramp. I may experiment with it more.

Take care,
Lazylegs
 

·
Registered
Joined
·
421 Posts
That sounds scary. I suggest you keep your phone nearby in case you need help.
I have been fortunate not to have any swallowing issues. Mine is more disfiguring. An example would be one finger up at an angle, another down while another is curled under. How long it lasts changes each time.
I tried the Tens but it didn't do anything. I am thinking it may be I am not getting it at the start of the cramp. I may experiment with it more.

Take care,
Lazylegs
I had to wait 4 days before my fingers unlocked. All in different shapes. Doctors blamed it on Lupus at the time. Not really sure what caused it really
Keep safe
Wolf1
 

·
Administrator
Joined
·
10,196 Posts
There can be a different types of locking. You can have locking in the joints or in the muscles. In dystonia it is the muscle that cramps and can move the appendage or limb. Either way it causes discomfort and limits what you are able to do.

Take care,
Lazylegs
 
1 - 10 of 10 Posts
Top