Hi from Gothenburg, Sweden

[EliSjo]

Hi, I'm Elisabeth and I'm not exactly new. I've been lurking this forum for a while now but this is only my third post

As the title says I live in the beautiful west cost city of Gothenburg in thee kingdom of Sweden :smile:
I'm 41 years old and was diagnosed with ALS a little over a year ago, but have been having symptoms since Autumn of 2015. I'm married to Stefan who has been my one and only since 2000, and we have a son, Emil, who will turn 9 in December.
I still work 75% of full time, but mostly from home, not sure for how long I will have the energy to do that but work still gives me a sense of purpose and gives me something to do during the days so I'll keep at it for a while longer.

As for free time I try spending it with family and friends as much as possible. My husband and I love watching tv-series (bingeing really), and I also read a lot (close to 200 books a year).

As for my physical condition I am still fairly mobile, I have a walker to get around at home, and very short distances outside, but also a manual wheelchair to cover longer distances outside (provided someone pushes me.
My hands are getting weaker pretty quickly, this is also where I had the first symptom. But I can still do most things on my own (though I've since long given up on pesky buttons, zippers, hair ties and such )
My speech is crappy and slurred but I only have minor issues swallowing so far.

My only complaint, besides wishing this crappy disease didn't exist in the first place, is the muscle soreness. It drives me a little bit crazy to be in near constant pain.

Anyhow - that's it about me. Hope to get to know some of you better in time!

 

[WendyWooG]

Hello and welcome to the forum
Wendy x

 

[soonerwife]

Welcome EliSjo! Sorry you find yourself here. As you probably already know, this is a wonderful place for information and support.

 

[pittsburghgal]

Welcome, Elisabeth. I hope you visit us often here because you will find great people who will be there for you and answer any questions you may have.

I am sorry that you are experiencing such muscle pain and soreness. I can't help you with that because my husband has lower back pain but no real muscle pain. I'm sure others will chime in with advice for you.

Sharon

 

[Angiegal]

Hi Elisabeth!
Welcome aboard.

Angie

 

[affected]

Sorry to be welcoming you here.

Are you sore all over, or in specific areas?

 

[KimT]

Hi Elisabeth,
I have constant pain also. Things that have helped are sitting in a lift chair with heat on my neck and back, not trying to do things that require strength, careful when stretching or doing range of motion (I have tendinitis in all my joints but also rotator cuff tears), magnesium oil massaged on my feet and legs and Valium. My back got so bad in Feb 2016 I took Oxy for a few months. Then I had a few months with hardly any pain. It came back after I fell and moved and I was back on the Oxy for another few months. Now I make do with Tylenol and Advil along with medical cannabis.

 

[EliSjo]

Thanks for the warm welcome everyone!

I'd say my legs are giving me the worst grief at the moment. It's manageable during the day when I can switch position and move around a bit. Nights are worse. I seem to be lying very still in sleep nowadays, and I'm guessing that's because I'm having increasing difficulties turning to either side. So as a result I'm lying for hours in the same position and finally waking up because I'm in a lot of pain.
By then bending my legs, or stretching them out depending on how I was positioned is excruciatingly painful.
All joints in my legs hurt, my calves are very tense, and according to my PT full of muscle knots, groin, hips, and the bendy part where the leg joins the rest of the body have muscle soreness.
I also have some lower back pain and neck and shoulder issues, but nothing too bad.

I'm taking some very weak oxy morning and night. Can't say they're really helping. I was on stronger ones but they made me really woozy and sleepy to the point where I could barely function so I chose to stop. I also take a muscle relaxant at night.

I do some very light training according to a program my PT has composed. it focuses on retaining muscle mobility and what strength is left. Finally I have a TENS-machine, if you know what that is, which I'm using while I work (from home). It gives some relief while active - but it's a bit of a hassle to get going.

Anyway, I'm not really one to complain much. I adapt to my new normal pretty quickly and try to find workarounds for the challenges I face while I still can function on my own. However, until I started noticing that something was wrong with me I've always been a very healthy person, fit and in good shape with nothing more serious than a bad cold.

And I think this is part of why I feel so frustrated about being in pain so much - it's a constant reminder that I'm fatally ill. As if I needed a reminder..!

 

[affected]

I'm so sorry about the pain.

There are some things you can try - the mattress may need attention or the actual bed. My Chris had terrible shoulder pain in bed until he moved into a hospital bed.

Massage, magnesium orally and rubbed into the muscles, ROM, heat. These things can all help too. Be really careful with the PT training, don't presume you can do this week what you could last week and overdo without meaning to.

Do you have a CALS?

 

[EliSjo]

I do eat magnesium which has been effective to prevent cramps on me. I rarely get cramps now.

What's ROM?

I don't have a CALS yet, unless you count my family members. At my last doctor's appointment in July my doctor thought I should apply to get someone professional in, but as I'm stubborn and still pretty self sufficient I decided to hold off until my next appointment in October and re-evaluate then. Most things would certainly be easier (not to mention a whole lot quicker! 8)) with assistance but I'm not feeling ready yet I guess.

 

[NothingButLove]

Hello Elisabeth and welcome to the forum

ROM = range of motion

Basically, it's moving your limbs to help increase their range of motion. My wife's doctor said you want someone to move your limbs until you just began to wince but not further. You can look on YouTube to see some examples of range of motion exercises. My wife has contractures in her right arm. I'm supposed to be doing ROM exercises for my wife but she hates doing them.

I understand the leg pain during sleeping thing... I get up at least 3 times a night to re-position my wife. One thing that has helped is a hospital bed with a alternating pressure mattress. It redistributes the pressure points while you sleep. Additionally, the good ones are deep. You can adjust the pressure so you sink into it and it helps to distribute the pressure evenly. I got lucky and picked up a mint condition Invacare hospital mattress on eBay. Before we got that mattress, my wife was waking me up ever hour. I had to do something because we were both going insane from lack of sleep.

For drugs, my wife was prescribed Tramadol. She got sick on it the first time and hasn't taken it since. My wife was then prescribed Ambien which knocks her out and gets her to sleep but doesn't help with the pain. It wears off quick and before long, I'll be re-positioning her.

Take care Elisabeth.

Rob

 

[affected]

ROM got explained, thank Rob!

You can search here on ROM and massage and see video of how I used to do this for my Chris for his arms and hands.

You may find a hospital bed really helps as you can use a remote to do some slight repositioning or it may help you turn a little.

Please start accepting some help - the more energy it takes you for all the little day to day things, the less you have to enjoy your life. Try to think of it as the best way to snub this disease - making sure you have time and energy for what you want most by using equipment, technology and people assistance to the best benefit!