Sick and tired of being sick and tired.

[bilphi]

I was originally diagnosed with ALS in August of 04. This last August my neuro changed the rx to PLS.

During the course of treatment for ALS/PLS I was experiencing a lot of leg pain. To make a long story short a pain clinic discovered several degenerative disks in my back. This led to a spinal chord stimulator implant which takes care of the pain.

Following the implant I thought that I would return to feeling "fair to middling". Not so, I'm always tired, no energy, no ambition and I generally feel cruddy. My legs are now just weak but my shoulders and neck seem to be stiff and painful all the time. My apetite stinks and I've lost about 50 pounds in the last year.

Do most PLS patients feel this general feeling of illness? I'm not liking it much.

Bill

 

[Jocelyn]

Bill- I'm sorry you are feeling this way. It is my main feeling every day, too. I usually just feel fatiqued but if I do too much will be down with what appears to be flu-like. I even run a very low grade fever. I usually sleep it off in 1-2 days. I try to be careful not to have this happen though.

I still work full time and usually have Saturday to regenerate a bit. Sundays are spent doing the things I love- cooking and sewing with a little cleaning involved too.

Maybe you are just in a bit of a decline. Mine sometimes levels off and I have a few really good days. I sure hope you get to feeling better though. It's definitely a humbling disease.

Ronda

 

[bilphi]

Ronda

It sounds like we have simiilar symptoms. Flu-like is exactly how I would describe how I feel. It's so constant though.

How on earth do you continue work feeling like this? I admire you're stamina. I don't work and do very little around the house.

I used to work in my wood shop quite a bit but can't even bring myself to do that even. I hate this feeling, I feel so useless.

I'm sorry you're feeling poorly also, but it's comforting that I'm not the only one feeling this way.

Thanks so much for your reply!

Bill

 

[Jocelyn]

I work because I have to. DH and I made a poor business decision in '07 and lost quite a bit of our savings. I figure I will need to work another 10 years and then I'll be finished- I just hope I make it.

It is comforting knowing that I am not alone. I feel alone very often- especially when the doctor looks at you puzzled. I cannot tell you how many puzzled looks I received for telling them that going down stairs was hard but going up wasn't too bad just exhausting. I read about several people on here that have said the same thing!

I have days when I am upbeat but anymore I feel like I am just barely getting by. My kids are grown and gone and I basically work and sleep Monday - Friday, recoup on Saturday and just 'hang out' on Sunday.

My meds do wonders for me. If I didn't have them I'd be bedridden. I thank whoever is out there working on the research/development of these drugs. I do worry about having grandkids someday. I am fearful that I won't get to be the grandma I envisioned I'd be.

I hope you are feeling a bit better today.

Ronda

 

[sral]

Rhonda,

I'm glad you are still able to work.

By the way you mention that your meds help you. What kind of meds do you take?

I had thought that there was nothing for PLS but I just can't believe that. There has to be something to make people feel abit better.

 

[Jocelyn]

I take: 200mg Zoloft, 100mg Tramadol (Ultram) 3 times per day; 225 mg Lyrica 2 times per day; 1 10mg Baclofen 3 times per day.

The tramadol is for the all over body pain, the lyrica is for the nerve pain (burning mostly) and the baclofen is for the muscle spasms/cramps - spasticity. I'm sure you probably already knew all that though.

If I miss even one dose, I am in trouble. It takes 2-3 more doses to get me back to even again. I HOPE I can make it another 10 years. I have had this for 7 years so far and mine is obviously progressing very slowly. I level off for a while and then something pops up. Right now my mouth is taking a beating because my jaw tremor is a bit whacked out. I keep biting the sides of my cheeks.

I have also begun to have shoulder/arm issues. It used to be below the waist only. At night when I am laying in bed, I have the muscle/nerve confusion with jumps of the limbs (the other day I actually hit myself in the face ). It even makes my diaphram spaz out and knocks the breath out of me for a second.

I know at some point I will probably need to get disability but do not feel I am there just yet. I'll hang on as much as I can to work.

Peace,
Ronda

 

[bilphi]

Ronda,

Want to hear something amusing? My neuro says that PLS is "a damn nuisance!" I know he means in comparison to ALS, but I think it's a bit more than a nuisance.

I admire your stamina and determination, you're inspiring. I wasn't that far from retiriing so I decided to retire. I'm not sure if it was a good idea or not. Right now you have the motivation of getting up for work each day. I, on the other hand, really have to rally my strength to get out of bed and accomplish something each day.

I know it must be very difficult for you. I hope you maintain your strength and determination to make it to the point you NEED to.

It's nice to chat with someone who understands how I'm feeling. I think the hardest part for me is that I look perfectly healthy and some of my friends and family seem to think I should be able to do anything. I tire of saying no all the time, but I have so little energy that I need to pick and choose each thing I do in order of importance.

I hope you have a wonderful day and have another one of your "good stretches" soon.

Thanks for writing.
Bill

 

[Zaphoon]

Bill,

That sure is a lot of weight to lose in one year!

My first neuro diagnosed me only as far as suspected mnd. If it turns out to be an mnd, its going to have to be PLS because I haven't had any LMN to this point. I find out more on Thursday. My shoulders are toast and legs seem weak. My distills are good, so far.

But man, 50 pounds lost in 1 year! Have you stopped losing weight?

Zaphoon

 

[crystalkk]

Zaphoon,

What are your symptoms? besides pinched nerve..... I have been reading your posts but I have brain fog.

 

[Zaphoon]

Crystal,

Oh, the usual - twitches (right now they are rolling through my gut) in legs 24/7 and less often in shoulders/arms; constant cramps in legs; weakness in arms; hyperreflexic; 1st neuro said babinski sign; lots of spasticity off and on.

Both of my shoulders have lost range of motion and strength. My right shoulder was frozen last year, diagnosed was tendonopathy. A chiropracter manipulated it loose (that was uncomfortable) and I got some range of motion back as well as some strength but then the bottom fell out a few months later and I lost both motion and strength.

Walking up steps is difficult only when the spasticity is ongoing.

My hands have justed started to do a cramping thing (mainly right side).

So far, its just my proximal muscles that seem to be affected the most, although my right foot looks like it has gotten flatter/wider just behind the toes. I can still run my fingers up and down a piano like Mozart and that is good.

One odd thing, my big toe on my right foot gets a burning sensation on a fairly regular basis. This is good because that should have nothing to do with motor neurons.

I'm not whining about any of this and my tuning customers find it fascinating.

Zaphoon

 

[lydia]

Hello Bill and Rhonda,

Your discussion is all so familiar to me. I also have an overall ill feeling. When it first started I kept checking my temp-I thought for sure I must have one, but nothing. I am also being evaluated for PD and have learned that feeling of malaise is common in PD and has something to do with the diminished dopamine in the brain. I feel like I am barely making it at work. Rhonda, I also put my time in, come home and rest all night, then REALLY REST on Saturday, try to do enjoyable things that require little motion on Sunday. Very little housework. You do have to pick and choose, to prioritize every task. Lately at work I have tried to visit more with some of my colleagues who each have an amazing sense of humor. They get me laughing so hard-I get some type of rush that keeps me going another hour...then I repeat process again and again. I am so fortunate to have a flexible job where I can come and go as I please (sort of), and the past 4 work days are the first ones since September where I have stayed more than 4 hours. I owe it all to my laughing medicine. :grin:

By the way, I know many fitness-freaks (for lack of a better term) who describe the worst part of the hike as the part where you go down the trail! I don't get the physiology, but if your legs are wiped out for whatever reason, to me it makes sense going down is harder.

Take care you guys,

Lydia

 

[bilphi]

Lydia,

I learned a new word.....malaise. I looked it up and that's exactly how I feel. I just can't seem to shake it.

I'm not familiar with PD either, that one I couldn't Google.

Bill

 

[Geo]

PD is Parkinsons Disease its a Neurological Disease also Geo

 

[Geo]

Anytime theres Balance issues Falling forward is by far the Worst ,If you think, thats why God Gave us a Butt
Lots of Cushion ,instead of your face .So going down is YES Bad .I have fallen into the corner of the wall and done a number on my face BLACK AND BLUE .Geo

 

[Geo]

Malaise is Just Plain old Depressed Feelings ,goes along with Crying ,getting angry .This all comes from the Brain Stem area . Balance comes from the Cerebellum which is right there also . Geo