Learning to cope!

[Pine_Knot]

I have been very active most of my life. I'm now in a wheel chair most of the time. It's all I can stand most of the time. I don't feel like I can talk to anyone about it that will understand in my family or even doctors. I don't think they believe me. I take morphine for the pain in my lower back and legs. Does anyone know if this is helping or hurting with the strength and spasticity in my legs?

[StevenSims]

Hi Gary,

Sorry to hear your problems! I'm 40 and I was diagnosed with Addisons in December 2002 with no clue of ALD? My symptoms started when I was 33, I try to keep active and use a cross / elliptical trainer every day and the only medication I take is for Addisons, when I was first diagnosed I tried lots of different medications but not good!

Not many men suffer with pain? Mines worse through the winter when Vitamin D levels are low and I use a Actipatch from November to March and supplement with Vitamin D3 and ZMA these make a difference!

I think it's best to keep as active as you can and stay positive!

There's loads of guys here that will welcome a chat!

All the best

[Pine_Knot in reply to StevenSims]

Hi Steve. 

Thanks for the advice. I will start trying to take some good vitamins. 

[COwithAMN Administrator AMN EASIER Volunteer]

Hi Gary

It's tough to have to admit that you need a wheelchair to get around. I am in the same situation though  I am much older (72) and now use an electric scooter to get around.

I don't believe morphine will affect the strength of your legs or the spasticity in the muscles.

I do know that my consultant tells me that baclofen (the most commonly prescribed spasticity drug) does have the side effect of reducing leg strength. I don't take it but this is because when I tried it years ago it did not have any affect on me.

As Steven says, the most important thing is to try and stay active and positive.

All the best

Chris

[Pine_Knot in reply to COwithAMN]

I don't take the baclofen because it drastically reduced my leg strength. I would rather be spastic than not have any leg strength at all. 

[monkeybus]

Pine_Knot, hello there.

I'd like to extend a warm welcome to you as well.  I'm battling against this disease every single day, though no pain for me.

My mother has pain in her lower back.

Can you tell us more, like how old you are now, when the symptoms started, the progression, any other symptoms you have.  We'd all like to know.

What's with the pain in your back/legs?  Is it constant, or does it come and go?  All I know for neuropathic pain is Gabapentin/Lyrica, and they turn my legs to jelly.

I'll join in with Steven and CowithAMN, you have to stay positive.  All is not lost.

I'm 45, by the way.  My symptoms started proper ten years ago.

How about yourself?

[Pine_Knot in reply to monkeybus]

I'm 33 years old. I was diagnosed with addisons when I was 18. I was in the hospital with a heat stroke when they found the disease. I've had all the symptoms, neuropathy, toe drop, RLS, and paraparesis, ever since I was diagnosed with addisons. 

I have had servere pain constantly in my legs and lower back. I take morphine on a daily basis for the pain, but it gets so bad at times that I have to go to the emergency room for a shot. That only helps for a couple hours, but any relief is priceless. 

My main goal in life at this time is to stay positive. 

I'm a religious person and I feel like God is the only one that can see me through all this. 

[SongStream]

Hi Gary,

Steve here in California.  I am 53 with Addison's (age 16) and AMN (age 37) after my brother was diagnosed.  Like you, he was diagnosed with Addison's after an Addisonian crisis and almost died. Just on that note, I feel that I was granted a 2nd chance at life.  I know I speak for many when I say I understand how difficult it is to share our medical condition as we are truly a rare and unique case.  This can make a person feel isolated.  I now say to others that I have a spinal disease with adrenal gland insufficiency and bring AMN printout/info including research to my doctor visits.

I tire easily and feel I have tree trunks as limbs; however, the adage "use it or lose it" is true.  I practice "adapt and overcome" and go to the gym 2-3 times a week:  cross trainer, treadmill, resistance training and yoga stretches. I push myself and I am on a high during the time I am at the gym.  However, it is short lived and the pain (neuropathy) and fatigue sets in. I also was recently diagnosed with osteoporosis in the spine which is wicked due to the nature of our falls.  However, I remain positive and grateful for what I have and what I am able to do today.  

Here's what I mean. Google: Steve Spohn on My Last Good Day. (Site won't allow me to provide a link.)

Keep on!