I don't want to sound ignorant as I haven't been on here in a while but I suffer a lot of headaches and I am in terrible back and leg pain first thing in the morning and I am struggling to get motivated. My symptoms started at age 42 and I understand that a lot are suffering worse than I am and my symptoms are milder than most but was wondering "how other carriers deal with the pain and stiffness".....also the weakness I am experiencing is deterring me from most things now and I am feeling really down which is having an impact on my family. (5 yr old daughter, 19yr old son and Husband). I lost a son at age 13years of age with ALD 13 years ago.
Much appreciated thanks
Leonie
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Leonie
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Are you on any pain medication? I don't know if my pain is from being a carrier, but I deal with hip pain and extreme pain in my lower back. I do have some arthritis, though, so I am not sure. I was on some anti-inflammatories, but had to stop due to ringing in my ears. Every morning is terrible getting out of bed. I feel like my lower spine is encased in cement. I no longer do yard work because I am basically crippled the next day. I still get around, I work, it's a bit better after exercise in the pool and yoga stretches. Then, I go to bed, wake up, and start all over again. I am 43. My back and hip have been hurting since my 30's.
Hi Leonie, I am sorry to hear of your pain and loss. I can relate. I'm 49 and a year ago I kayaked part of a triathaolon and was training to fast walk my 4th half marathon. Then I started having pain in my legs and back and
muscle weakness. Now I walk the dogs a few blocks, go to gentle yoga and easy water aerobics although sometimes pain and muscle spasams prevent even this.
Currently I take Tramadol , Naproxen or Tylenol for pain. Some times I take muslce relaxants like diazapan.
I 'm also being treated for reactive arthritis with Methodrexate an immunosurpressant.... that was what they daignosesd me with before I was a confirmed ALD carrier last month. I have an appt with a neurologist.. so we will see what he says.
So far the meds I mentioned above have helped, streching, physical therapy, and accupunture.. all of which I have tried in various levels over the past year.
I too and in the same boat...hip and low back and leg pain...my biggest frustration is lack of ability to keep going...I have been hard working and busy my whole life and now my body isn't always ready to get up and go...at times it starts to weigh on mental health...I have to remember just to do the best I can.
You are each suffering a lot of discomfort and pain, but you all deserve a big pat on the back for refusing to be beaten by this disease.
When you talk to people with AMN, it's clear that as well as there being many common symptoms there are also quite a few variations. I don't know if it's my imagination but I get the impression that women experience more pain than men. Having had AMN for 30 years, my own experience does not include pain.
What I have found most useful in dealing with AMN is to do stretching as much as you can. I do 30 mins or so in the morning and have a simple set of stretches I can do at home. If I don't do them, I don't feel quite as good on that day. Over the years the ability of muscles to stretch declines, so now my range of movement is much less. But I keep doing what I can do.
One of the other posts asks about exercise and I will post my own thoughts there about that.
Of course, the other most important factor about AMN is to try and keep a positive attitude and keep busy doing what you can do.
Firstly... PrincessDi.... I use to use Indicid suppository's and they were really good except they are NSAID...and apparently we (us carriers) shouldn't be taking them. Also they gave me a few side affects so I stopped about a year ago. So it is mainly panadol or nurofen that I take which help mildly. I know what you mean by your lower back is encased in cement....that is a perfect description. So no doubt your hip and back pain is carrier symptoms as they seem to be for everyone.
Margie....I believe that all your symptoms are carrier symptoms as I have the same issues. Doctors thought I had arthritis, lupus, and all sorts of things and was tested negative for all. So then you are left feeling like you are making it all up and the doctors just give up. So it is comforting to know I am not alone when I come on here. I find stretching is a necessity as it help the cramping and stiffness. But I wished at times there were something that would make this all go away but realize I have to face facts that it isn't so we just have to soldier on. Also thanks for the pain tips....I shall give those a try.
Jlcams.....I too work full time as a Learning support officer at a high school since march this year and the hours 9 till 320 are just enough hours as I am really lethargic at the end of the day so I feel very blessed to have an easier job now as my work prior was very physical and it was getting so hard and had to stop. I have also gained weight due to my lack of energy which obviously making matters worse.
Chris....Yes my brother has AMN and he says the same. Never suffered pain but walking with a cane and all the rest that comes with this dreaded Disease. And you are too right. Keeping positive and doing the best we can in our current situation is all we can do.
Again thank you all for responding and sharing your opinion.
Counting my blessings and sending out love and prayers to you all.
Thank you for your update. I'm glad that you have found pain relief!
I was diagnosed 8 years ago but it has been in the last year that I am experiencing the pain that you and everyone else here is experiencing. I have chronic lower back sciatic pain that shoots down my leg all the way to my ankle.
I have had a cortisone injection into my L4 but it didn't relieve my pain. That was the end of April. Three months later I had a medial branch block which involved three injections into my L3, L4 and L5, sort of like acupuncture but not. This came about because it's another route and also because I have mild arthritis that may be causing nerve blockage. So far, this has worked a bit better than the cortisone injection in that I'm able to do some physio and strengthening. I'm hoping I'm making progress.
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