Chronic fatigue for ladies with AMN/ALD

[Catrick]

Hello, I'm new here, I'm a woman with AMN/ALD and my history is complex so I'll go into that another time. For now I have just two questions, I'm 64 and have had increasing symptoms since I was 44. One is chronic fatigue, I find I'm only functioning about 3-4 or 4-5 hours a day and then have to rest. I have a lot of spasticity and muscle cramping but can't take baclofen. I'm told the fatigue is a typical problem with MS. Also wondering how ladies with AMN are coping with this horrible virus, I know we have to lockdown and shield from the world but its not easy, my outings used to help keep me ticking. Main question is to see if other ladies are experiencing this progressive fatigue?

[StevenSims]

Hi,

It's rare for women but it could be Addison's disease? It will be worth getting it checked?

All the best

Steve

[Catrick in reply to StevenSims]

Hi Steve,

They say women don't suffer from Addisons related to ALD but I was given a steroid excess by the French medics, (for something minor), back in 2001, when I was 44, which left me very unwell for a year. I was eventually transferred to a clinic in the UK for 7 weeks.

Later it was established the steroid overdose had caused adrenal damage but I'm told I'm officially 'intolerant' of systemic steroids and have been advised by endocrinologists and neurologists to avoid steroids at all costs. They say steroids will damage the immune system further and just accelerate the disease so there's no treatment for my adrenal insufficiency as they call it. They don't refer to it as 'Addisons'. The steroids I was given in 2001, Betamethasone tablets, unearthed the AMN/ALD although I wasn't diagnosed until 2006/7.

Apparently all demyelinating diseases can cause chronic or progressive fatigue, so I hear.

[StevenSims in reply to Catrick]

Hi,

Addisons is Adrenal insufficiency! Cherie on here was diagnosed recently! I'm sure she'll reply to you?

All the best

[Catrick in reply to StevenSims]

Hi Steve,

It would be good to hear from Cherie. I'm completely wiped out by the evenings, but I don't think there's anything to help this since steroids are not an option. Case of pacing myself each day.

[Cherie in reply to Catrick]

Hi.

I was diagnosed with Addisons 4 years ago and I know of one other lady in UK with it although I believe there could be more as not many of us are being checked. I was tired and falling asleep by 4 pm. I am on 10mg Hydrocortisone when I wake up and then 5mg and a further 5mg and it has certainly helped, but as joloncy says we need to pace ourselves as well. Have you joined any Facebook pages for ladies with AMN as there are also some with Addisons in other parts of the world. Do you still see an endocrinologist? There will be others on here that understand steroids and their use better than me.

What part of the the UK do you live?

I am unable to take Baclofen due to the side effects and can only take pregablin at night also due to the side effects. I have had botox in my legs about 10 years ago but that was a disaster as well! I now use a walker since a bad fall in January or a scooter to go out, and I use FES for my drop foot.

I hope this site can help you get some answers.

[Catrick in reply to Cherie]

Hi Cherie,

I live in France so I'm not covered by NHS. I don't see an endocrinologist, it gets too expensive! I had thorough tests done 10+ years ago and while my morning cortisol was normal, blood tests showed it was less than half of normal by 5.00pm and virtually zero by 10.00pm Hence the adrenal insufficiency. It was caused by the steroid excess causing damage in 2001.

I definitely can't take steroids, similar to people with lupus often can't tolerate steroids. Two Profs. of endocrinology confirmed this, as did a senior neurologist at Harvard in 2003.

I'm on a heavy dose of narcotics, I developed an infection of the spine in 2004, (my immune system down thanks to the steroid excess), it took a year to diagnose and then a year of hefty antibiotics to cure the infection. I was unable to have the spinal reconstructive surgery usually done post infection so I live on increasing doses of narcotics. They make me tired of course but I rest better with them so its two-edged sword.

I only function about 4 hours a day now so I only check emails every 2-3 days, please excuse.

Its interesting to hear ladies do suffer from Addisons with AMN/ALD. I found so little is known about women with this malady in the UK. I think the only medics who have done extensive research on women with AMN are in Holland, they've written two very helpful papers in recent years that I know of. I'd get to Holland if I could with a list of questions.

At the moment I'm just hoping I can avoid this damn virus, it would finish me off if I got it! I walk with 2 sticks but need a wheelchair.

[Lexington40 in reply to Cherie]

Hi Cherie - what was the experience you had with Botox?

[Cherie in reply to Lexington40]

Not good I am afraid. I was given 1/2 dose in each leg. I felt good for a couple of weeks and then it made my legs go very weak. I struggled to recover for about 6 months. How was your experience?

[Lexington40 in reply to Cherie]

I had my right calve injected. A week later lost all muscle strength. It lasted for several weeks.

[Cherie in reply to Lexington40]

I'm sorry to hear that. Are you feeling better now? It is interesting how it doesn't work for some people.

[jolocny Volunteer]

Hello! Welcome to our group!

I was diagnosed when I was 46 and am 61 now. More than falling or anything else, I battled extreme fatigue. I knew that I was pushing myself to do what I "used to be able to do". My body just wasn't able to keep up and I couldn't tell until my body would go into brain fog and then it'd put me down wherever I was. That was the first symptom that I really needed to know and understand better. I learned quickly, and then my family had to understand, that when I said I needed to rest ... let me rest! I still get this need to at least sit and rest through the day. I volunteer part-time (director at a food pantry) and when I get home I take a short nap to come back. I find that every day I'm just better by taking physical breaks, resting my body for 10-15 minutes or taking a nap. I just work better after that!

I heard this year at Kennedy Kreiger that it's now being acknowledged that women can have Adrenal Insufficiency (Addisons) as well as men. I was tested and I don't have it, as of last September. But I've also heard that women can give a false negative on the test?

We carry on despite what the medical community has to say!

I am in a wheelchair all the time now since I seriously wrenched and broke bones in my left foot. Doctors felt it was better to have me in a WC so I would allow the breaks to heal. Up until then, I walked with forearm crutches. This isn't the physical response of most of the ALD/AMN sisterhood! **Keep upright as long as you can and keep exercising to maintain as much as possible!**

You did't say if you still work? Please pay attention to your body when it gets fatigued, rest or nap when you get a chance. If you're out, use the electric carts in the stores so you save your energy for better things. Life still happens! Take care to be sure you're part of it!

[Catrick in reply to jolocny]

Hi Jolocny,

I was sorry to hear you broke bones in a foot, that doesn't help the AMN/ALD situation.

I mentioned earlier I had a spine infection, osteomyelitis of the lower spine, back in 2004-2006 and the specialists tell me its probably the worst thing I could have developed with a progressive thing like AMN. ( Due to the increasing spasticity of the spine.) The pain is off the charts now, hence taking a lot of narcotic. No, I never have highs! It does help me to sleep though.

I haven't been able to work since I was given the steroid overdose in 2001.

I cut myself off every day from about 1.00pm-2.00pm and rest until 6.00ish. A pain specialist is now in charge of my case and monitors all my meds, he's not keen on my taking Amantadine.

As I mentioned earlier I just wish I could get to Holland to see the consultants there, I think they are leading the research on women with AMN/ALD.

[tieaknot]

Hello! I am an almost 45 year old woman and I have bouts of fatigue that kick my butt. I might be doing ok for hours or even days, then it feels like I hit a wall and crash. It is an exhaustion I cannot describe. I can’t “push through” the way I used to. Brain fog makes it so I can’t even form a thought. It’s a profound physical and mental fatigue. Then I give in and rest, and it’s sometimes like plugging in a cell phone, I might be able to get back up and squeeze a few more hours of functioning! Other times it is days or more of what feels like walking through mud up to my eyeballs where everything is a slow painful effort. I also have been told that this is more common of MS. I have been prescribed medicines that people with MS use for fatigue but they didn’t work for me. (Amantadine and provigil)

I find a goal and make a plan and just resting when I need to no matter how frustrating or inconvenient is the only way I can manage it.

Oh also...I was tested for Addisons a couple

times and it was normal each time, but I did have a stress dose of steroid during a surgery (recommended by my end I) a few years back and wow! I healed so much more easily and felt so much better!

[Catrick in reply to tieaknot]

Hi Tieaknot,

Just a quick reply to say its good to hear from you. Yes, the fatigue is bad news and I don't fight it at all, I go and rest.

I find other people don't understand which is frustrating. The one exception is I email a friend with MS who has similar fatigue and brain fog, its a case of not trying to problem solve when feeling very tired. I have to pace myself through everything but the fatigue is getting stronger.

Specialists have told me that fatigue is often part of demyelinating diseases.

[nan17]

Hi and welcome, I am in Canada and, as best I know, the only woman here with active AMN symptoms. Fatigue is definitely one of them even though my adrenals test perfectly! I am "retired", but work at home with writing and an almost completed manuscript for a book. Now that I am in isolation, I find I am not able to be as active trying to keep my muscles strong. I actually have more energy but I am losing my muscle strength. Usually one good day followed by one bad day. I can't take Baclofen either. I plan to sleep 9 hours each night, and then do what I can during the day. I walk with a walker. Life is manageable but definitely downsized compared to the good ole' days. Best wishes.

[Catrick in reply to nan17]

Hi Nan17,

Good to hear from you although I'm sorry you have AMN too. I'm surprised you are the only women in Canada with active AMN. I wonder if many women, as with my first cousin who has since passed on, aren't misdiagnosed with MS perhaps.

Baclofen and Sativex, the medical cannabis, both leave me unable to function, they're very fatiguing so they're not possible. My pain specialist tells me these maladies are often 'medication hostile' so perhaps that's it.

Best wishes and I'm also trying to isolate but at least we live in the country with many acres of land and wildlife around us so I get out a lot.

[Teeka_97]

Hi glad you joined. This group helps me understand some things. I am 59 and have chronic fatigue. I spoke to a Dr. That has retired and he told me to start taking Vitamin B1 and B12 the one you put under your tongue. That seems to help. Try that and see if it will help you.

[Leonetho]

Hell to the yes .... fatigue hits me like a truck. And like Jolocny, I have to just stop with my legs up and nap for half hour.

I'm 52. Symptoms started at 42.

I've been having B vitamin complex injections and they have helped marginally.

Welcome to the group ♥️

[Catrick in reply to Leonetho]

Hi Leonetho,

The fatigue is no fun. I rest for at least 4 hours each afternoon and sometimes sleep for 2 hours. I do feel better if I can.

I'm on lots of vitamins, including the 'B's although I hear B12 injections do help. I'm loathe to ask for anything like that while our doctors are all battling this damn virus. I phone through my medication needs and I get a prescription by email so I don't see our GP now, as much for his protection as mine.

We have a small animal rescue so I pace myself as I can, animals need feeding and treating and neither respects a chronic fatigue situation. The fatigue is progressive, its not getting better as I age and the AMN/ALD advances.

Best wishes, C

[Lexington40]

I have nearly the same story with my AMN. My fatigue has gotten worse over time. I am meeting a few weeks with a physician at the Mayo Clinic. I will share what I learn.

[Catrick in reply to Lexington40]

I’ll be interested to hear what the physician says. Perhaps a low dose of steroid treatment to help the fatigue but only if you can tolerate steroids.Best wishes, catrick