Back pain

[spalding]

Suffering with severe lower back pain am struggling to get out of bed in morning when up and moving it eases a bit got MRI tomorrow is this common with women with AMN

[COwithAMN Administrator AMN EASIER Volunteer]

Hi, his may have nothing to do with AMN, or it may be related. What we do know is that with AMN your legs are becoming stiffer and your walking more difficult. I don't know what stage of AMN you are at, so it's hard to be more precise.

What we do know is that you need to keep the legs and lower back mobilised. This means you need to keep legs and stretched every day.

The most likely reason for your sore back is that your muscles are stiff from the AMN, and this cause tightness in the lower back. You then get pinched nerves and these can be painful. I have experienced a bit of just that over the years. AMN is probably contributing but a sore back is not a "symptom" of AMN.

The starting point is to get out of bed, take some paracetamol or Nurofen (or both) and make a vow to start your day each day with some leg and back stretching. If you need help with exercises that might help, please ask. Soon you won't need painkillers.

[jolocny Volunteer in reply to COwithAMN]

Right on, Chris! (My age is sneaking in there!) Any change in how you’re able to walk will effect the muscles - especially through the pelvis. If you can, I suggest you see a physical therapist that can help you with simple strengthening movements you can do either standing or lying down. Repeating these, and stretching before you get out of bed, will help with the pelvis stability and balance.

I’m well advanced with AMN and am mostly in a wheelchair as I’m very slow walking. I am currently in PT to learn balance in my seated state as I’ve developed arthritis in the sacroiliac joints in my pelvis. PT has helped me to gain balance through the pelvis so I sit correctly, am able to stand and to lift my legs to walk. I will admit that I let these basics go while I attended to my husband after a mild stroke and 2 surgeries. I paid for that! I need to follow my own mantra that we need to care for ourselves first before we can care for others! Too good a lesson!!

Please take each change in your movement and stability as a great reason to care for yourself - which will enhance your life in all ways! Be good to you, my friend!

JoAnn

[Hillary in reply to jolocny]

Hi JoAnn, sorry to hear your husband has been ill, I know what you mean about letting things slip while looking after someone. I feel I’ve deteriorated after my awful year and am looking into Toning tabels, wondering if this would help me as I’m no longer able to go to the gym.

Best

Hillary

[monkeybus]

My poor mother has been suffering excruciating back pain for years now.

Connected to her mutated ABCD1?

We need more input from the ladies.

[Hillary in reply to monkeybus]

Doing our best😊

[monmon]

Hello, I second COwithAMN. My AMN gait troubles are still fairly recent so no major pain. But my mum suffers for bad lower back pain as a result of spasticity and muscle stiffness. She finds keep moving (I know... easy said...), stretching and - her favourite - walking in shoulder-high water of great help.

[Hillary]

Hi Spalding, getting out of bed is always a problem. My legs don’t want to work first thing in the mornings. I have a Tempur mattress which I find helps lots, I also have a slipped disk. As everyone says, stretching and movement of the pelvis are the best things to do first thing. Chris is right also about taking some pain relief, it may help and you don’t need to be on it forever. When younger and more able I used to go to the gym, had a programme of exercises for helping lower body and also to develope upper strength. Depending on where you are on this awful journey keep asking and trying different things

Best wishes

[julie_]

Well, this is a spinal cord disease. My lower back has been spasming for some time, which affects my balance, gait and strength. It is interesting reading other posts here about how you USED TO go to the gym as I am still going 3 times a week (I'm 53, turning 54 this fall) and I have been thinking I may need to think about that day when I also won't be able to go anymore. That would be a shame because I am much less stiff after my workout.

Anyway, yes, it takes me a while in the morning to get the kinks out and even then after I've stretched, done some physio and taken my baclofen and 4-AP, my mobility is still limited getting out the door to work. I walk very slowly.

[COwithAMN Administrator AMN EASIER Volunteer in reply to julie_]

Hi Julie, don't think about giving up the gym when you are older! I am 75 in a few months time and still try to go to the gym 2 or 3 times a week. I do find it raises my spirits and loosens up my legs, though I am often a bit stiffer the day after, though this doesn't last. I sometimes have to force myself to go, but it's worth it!

[julie_]

Hi Chris, thanks for the cheer! Yes, I do feel the benefits of working out and still enjoy it. I do hope that there won't be a day when I'm just not able to do it.

P.S. - I'm sorry to have missed the ALDLife weekend and seeing you!

[COwithAMN Administrator AMN EASIER Volunteer in reply to julie_]

Hi Julie

Yes, I was looking out for you and was sorry also not to see you there. There were quite a few new AMN-ers this year who it was good to meet. I am pleased to see that you are bashing on!

[monmon]

Glad it’s the ‘keep moving’ theory that... keeps moving! I’m a fitness instructor specialised in exercise and disability (and I have my own AMN’s spasticity, stiffness, poor coordination and balance to deal with... counter-intuitive eh? ☺️). In the gym where I teach we WANT people of all sort of mobility (or lack of 😔) to keep coming (we even have MOTOmed that’s just gorgeous:

motomed.com/en/

I think the more we ‘pester’ gyms the more they’ll have to adapt and become a permanent asset for EVERYONE (the NHS physiotherapy - at least in the UK - is only available for a set number of weeks then you’re alone...).

[Cherie]

I have a lot of lower back pain. It was one of the first symptoms I had before I knew I had amn, and nothing has ever shown on MRI or xray. Unfortunately no drugs help it (apart from Tramadol which I am not prepared to take more than 1)and the more I exercise the more pain I have. I used to go to toning tables many years ago and gave it another go recently but there were only three of them I could do that were painfree. At the moment I am trying hydrotherapy and acupuncture. Please try anything to help relieve it as it effects us all in different ways