I just found this group and thank you to whomever created it. I am a 39yr old female with AMN. My first symptoms started in my mid 20s. I am frustrated and disgusted by my lack of coordination and ability in present time. I had mild symptoms until about 4 years ago. I have gone so far downhill since then.
4 years ago I was a waitress. Yes I walked kinda funny but still worked 14 hr shifts dealing with back pain. Today, I cant clean my kitchen for more than 10 minutes before excruciating pain makes me sit down for an hour. I've read stories here and in other groups and I am comforted on one hand, (I'm not alone) and terrified on the other. I feel myself slipping into depression because I've lost so much of who and what I was and only see this getting worse. Ladies, please help me. How do you keep your spirits up? How do you find positivity?
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SpiceTiva
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I am currently taking meloxicam and flexoril. They help keep my back from seizing up. I'm not sure that is AMN related, (I had a lot of childhood back related abuse). Other than that, no. I am starting aquatic therapy on monday and my PCP wants me to do a spinal MRI as soon as I can afford it.
Shocking that you have to pay for an MRI. Are you in America?
My Mum has shocking back pain, as do some of the ladies on here. She finally told her GP about AMN (after five years), GP simply Googled it and said not to worry, women not at risk.
You might want to consider a painkiller and some spasticity medication. Plenty works.
You are doing well for having started to get symptoms in your 20s. AMN is progressive in women, there just isn’t enough info to have reached the internet to replace all of the wrong stuff out there! Like the men, we progress at different rates. Some women won’t show or feel symptoms and others have docs to help them with pain and movement.
Monkeybus is so right - movement and exercise will keep you going - both physically and emotionally. I’m glad to hear that you’re starting water exercises! I loved a movement program called Hanna Somatics so much that I became certified in the program. It’s all about reconnecting the brain and muscles through slow movement so we learn to recognize how this wonderful body we have was intended to move! I’ve found it to be irreplaceable for keeping my back relaxed after seizing up, and for gently reminding my shoulders and torso to keep balanced. It’s not accessible everywhere, unfortunately.
An MRI is a great basic test to have. It’s pathetic that insurances don’t cover them for people with our, and many other, diseases.
I understand the depression you have. I have that in waves now, it’s no longer as overwhelming as it was. I think what keeps me going is all that I DO have going for me. When some part of me decides not to work well, I work with my body with everything I do to keep going. I also find that it’s usually not something that I lose control of completely - some days are worse or better than others! I say “work with” because I find it works better for me. Count your blessings every day! It sounds crazy and can be ridiculous some times but it helps to focus on what’s going well. I’ve also done things that make life better - if it’s hard to walk through a grocery store, then use one of the electric carts. Find things like that that’ll help make the important things in life your focus! It was tough to use a cart at first because people looked at me funny. But it gave me the strength to get home and make a meal to share with my family - to actually be with them instead of in bed. I also sat when I felt my strength lapsing for 10 minutes to a half hour. I’d have energy afterwards to keep going! Explain to your family that you NEED that keep up. A short break and let others help out!
My kitchen hasn’t been scouted in years all at once. There are areas of my house that are dusty. Hey, it’ll be there until I get it done! My husband now does all the floor work. Doesn’t hurt him! Use a cane, or whatever, when you need to. Then prop it in a corner when you don’t.
This has been a major post and I apologize. I just want you to realize that it’s STILL a good life! Don’t beat yourself up. Find ways to make it better and then change it up as you need to. Stay as active as you can, learn how little (&how much) you need to do to keep yourself going both physically and emotionally and do it!! Give yourself a break ... not many other people know or understand what’s happening to you! Explain to those closest to you so they can help when you need it, just don’t give up doing what you have or want to do.
OK, off my soapbox and out to the coffee machine! Be good to yourself!!
I understand on all accounts and you are not alone...use that knowledge to keep you grounded. Honestly, finding others that have similar symptoms and issues to my own has been such a huge help to me. I started feeling like I was crazy because doctors kept telling me there was nothing wrong with me. It can be very depressing. I find that it comes in waves too. I get so frustrated at what I can’t do and I was getting down realizing that “it will only get worse” BUT I have proved to myself and my doctors that it doesn’t have to be a linear decline and the “progressivity” of our condition isn’t on the micro level...meaning I’ve realized that I can have better days and worse days and that some things can help (exercise when I can, better diet, setting goals) push the level to better. Yes, overtime I know I will decline but day to day, I can still have some better days! (I love those better days because I’m dealing with AMN AND a whole bunch of other issues on top of it, so getting a “good” day seems to need the planets to align! But BOY do I appreciate those days! And for others it might seem like a “normal” day but to me it’s like hitting the jackpot! Perspective really helps!)
For me also, I was so lucky that my son wasn’t carrying the gene (he was 4 when I was diagnosed and I was terrified for him! He’s now 10). I promised myself I would try so hard to not complain about any suffering I might have to deal with and just be grateful that he was spared. There are days I must remind myself of my promise when I’m feeling pretty crummy. But there are so many here that have had to face so much with themselves, their sons or brothers or fathers etc. It doesn’t make my suffering or pain any less, but it does help me again, keep perspective.
There are days I have a great attitude and say that when the time comes I will bling out my cane and wheelchair and rock it if I need it! Other days I might cry in private after my kids might share that they are embarrassed of how I walk or “run” (aka zombie shuffle) to hurry somewhere when we are out and they’d rather I not come somewhere.
Sorry this is a novel. Just wanted to share that it can be a day to day intention and battle with my own mind and body...and as long as I wake up to another day, I am winning. But dang I’d really really love it if they’d recognize our pain, because it can be AWFUL, and find a way to treat it safely and without judgement.
Sending you a virtual hug!
(And yes get that MRI...just because we have AMN doesn’t mean we can’t have the “usual” problems that might be helped too!!)
I have struggled with depression since my daddy died when I was 5 so I know this disease is not the only reason I struggle but I do. I also started having trouble in my 20s and neurologist saying I was young and fine. I had a son to care for so I had a purpose and kept going. I was diagnosed when my son was and his doctor told me why I had difficulty walking. Honestly it has only been in the last couple years I have noticed doctors truly realizing our struggles. If only we could erase all the information off the sites that say carriers are fine or just have mild symptoms! Someday we will have "our"disease have it's own name so when a technician or doctor Googles it they will not find men with Addisons as the 1st information and look at us like we are crazy! I get off track sorry. So yes I struggle and have been on meds. The disease and what it has taken from me kills me but I still can do. It takes me longer and I get tired but I can do. I can't run and play with my grandchildren but I am the one they can count on to sit and play games and do crafts. If I was looking on me I would tell me to stop doing so much and be kinder to myself but I push because I have to earn my keep. Not because of anyone saying it but it is who I am and I am so grateful I have that drive. My daughter's friend was paralyzed a couple years ago at ago 24. Whenever i am down and feeling bad for my in abilites I think of him and get my rear in gear and am thankful for all I have. It is hard to ignore looks. It took me until I broke my hip to use a motorized cart in a store but if I wanted to go that is how it had to be. Wheelchair is difficult but so much more enjoyable to look up and around that looking down to be sure you aren't going to catch your toe or trip on something. I find too when I feel down often I am tired. I stop and lay down and sometimes fall asleep. i wake feeling so much better.
I've gone on too long. I am glad you have reached out and we are here for you. stay in touch
I get times when I feel down. Sometimes, plain sad. But I'm convinced it's neurological. I know I simply have to wait it out and it'll be gone. One, two days max.
Was easier when I used to booze. I'd just get hammered, put the day on hold. If I was able bodied, I can see how a decent bit of exercise would help.
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