My introduction - input appreciated

[Archie Kidd]

Dear all,
I feel I should introduce myself. I'm a fifty years young gentleman from the UK, and have been suffering a myriad of symptoms for almost two years.
I used to be a high functioning gardener and tree worker, running my own business.
I'll try to be concise.
It started out with extreme fatigue, that interrupted my work days. I'd miss my footing on ladders, and I'd be wiped out by jobs that would normally have been very easy.
So, I stopped working. First stop, GP. Through neurologists, rheumatologist, many MRI's and blood work, nerve conduction tests, ophthalmology and God knows what else.
Blood showed ANA and smooth muscle abnormality.
MRI's all fine.
My GP has suggested Fibromyalgia.
I am terrified that it's MND, or I believe ALS, as it's known as, in the USA.
Here's a succinct list of my symptom journey.
Fatigue with shakiness.
When I exert myself, my eyes present with visual aura.
Clumsiness and a vague dexterity issue in my left hand.
Chronic pain in shoulders, neck, ankles, bottom of feet, lower back, and numbness/tingling in shoulder.
Extremely easy to fatigue.
Cognitively, I'm finding it difficult to read, stay on track, organize things.
I have had major issues voiding when urinating, with frequent visits to the toilet. I'm now experiencing muscle twitching, in various parts of my body. Obviously I've gone to Dr Google and terrified myself. I'm not sure whether it's because I'm a man, but I'm left feeling crushed by the world's disbelief in my pain and despair.
The GP said we need to 'firm up' my Fibromyalgia diagnosis.
Please don't think me glib, or cavalier about this, but I almost wanted something to show up on the MRI, so I'd at least know what the Hell is going on.
The only saving grace I'm hanging on to is the fact that my grip is still very strong, and I haven't lost too much muscle, although I'm inevitably out of shape, and get wiped out by the slightest task.
Please, if you can, drop me any advice. I've been denied benefits help, and I'm currently taking it to a tribunal, although I'm being strong armed into finding work. I'd love to work, I lost my own business and I can hardly manage taking the dog for a little walk.
This isn't about money. I feel like I'm slipping away, I can't cope.

 

[sunkacola]

Hello Archie, and welcome to the forum. This is a place where you can get advice, sympathy, support and a lot of information. We are here to help each other.

First, I'd like to ask you to read my advice post on how to manage with fibromyalgia, and a lot of things that might make you feel better. Of course, ask any questions y ou want and we will answer you. Link to post below.

next, I want to say how sorry I am you are going through all of this, and that things are so hard.
I want to reassure you that most of us, including myself, came to this forum for the first time feeling overwhelmed, depressed, hopeless or frustrated, or any combination of those or other things. Even though it feels that way now, which is completely reasonable and understandable, it doesn't need to stay that way, and you can learn to live with this and do the things that will help you. We will support you all the way, every day if that is what you want.

Finally, if you are afraid it is something else, I urge you to get tested for those things specifically, as soon as you possibly can. Worry is making everything, all of your symptoms, worse, and that is guaranteed.

If you have a fear that you may have a disease that can be tested for, you need to find out. worry is always about what has not happened yet, so information is always power over worry.

Don't go to the internet any more unless it is for something uplifting or funny. You can't get solid medical information there anyway, and if you terrified y ourself that is clearly not going to help you. You could have read completely false information that scared you. Just don't do it.

If you have fibromyalgia, you will not slip away.
I know that feeling as well, had it in the beginning. But I learned what I could do for myself, and that empowered me greatly. You can cope with this, trust me. Just take it one step at a time, and the first one is to read my advice post, the second one to make appointments for getting tests for ALS. Fibro often has the same symptoms as ALS, but I believe there is a definitive test for ALS, while there is not one for fibromyalgia yet.

Hang in there. We are here for you.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[Archie Kidd]

Dear Sunkacola,
Thank you so much for your heartening reply. I did read the suggested post.
I have an appointment, early February, which I've had to go private for. Health is more important than any savings I might have. It's with a very reputed neurologist, so, I hope I can take the MND worry off the table, with his help and testing.
Thanks for being in my corner. It means a lot.
Sending my best to you and yours,
Arch.

 

[cookiebaker]

Hi Archie, and welcome
Sorry you are having to deal with all of this, but fibro is not a death sentence, even tho it can be very frustrating at times.

Dr. Google is not the best doctor in the world, that is for sure. There are so many things with similar symptoms that we tend to get hung up on the worst of them, Which tends to make things worse yet from all the worry/stress. So, Fire Dr. Google.

Sounds to me like you have had pretty much all of the testing usually called for to get an ALS/MND diagnoses and if it has not been suggested by your GP then I would let that idea go. If you are that concerned about it, ask point blank about it - could this be _______?

a positive ANA is not all that uncommon, especially as we get older - what does matter is the ratio - 1:80 is very low and not uncommon at all in someone over 50.

I hope your upcoming visit with the neurologist can put your worries to rest.

Best wishes to you.

 

[JayCS]

I am terrified that it's MND, or I believe ALS, as it's known as, in the USA.
Here's a succinct list of my symptom journey.
Fatigue with shakiness.
When I exert myself, my eyes present with visual aura.
Clumsiness and a vague dexterity issue in my left hand.
Chronic pain in shoulders, neck, ankles, bottom of feet, lower back, and numbness/tingling in shoulder.
Extremely easy to fatigue.
Cognitively, I'm finding it difficult to read, stay on track, organize things.
I have had major issues voiding when urinating, with frequent visits to the toilet. I'm now experiencing muscle twitching, in various parts of my body. Obviously I've gone to Dr Google and terrified myself. I'm not sure whether it's because I'm a man, but I'm left feeling crushed by the world's disbelief in my pain and despair.
The GP said we need to 'firm up' my Fibromyalgia diagnosis.
Please don't think me glib, or cavalier about this, but I almost wanted something to show up on the MRI, so I'd at least know what the Hell is going on.
The only saving grace I'm hanging on to is the fact that my grip is still very strong, and I haven't lost too much muscle, although I'm inevitably out of shape, and get wiped out by the slightest task.
Please, if you can, drop me any advice. I've been denied benefits help, and I'm currently taking it to a tribunal, although I'm being strong armed into finding work. I'd love to work, I lost my own business and I can hardly manage taking the dog for a little walk.
This isn't about money. I feel like I'm slipping away, I can't cope.

Hi Arch...

I can't see any symptoms of yours that are enough reason to believe you have MND/ALS rather than FM. Your strong grip I'd use as subjective "proof" it isn't. But yeah, get that and similar stuff checked to be sure, like what your GP means by firming up: Excluding "everything" else.

It's common for us with invisible conditions to sort of desire it were "visible" instead. But visible often doesn't make it better treatable either. The grass often appears greener on the other side... It's more help to look more closely at what we actually do have and make the best of it, esp. as we can't walk over to the greener grass anyway....

Mentally incl. coping-wise you may be slipping away some of the time, but you can quickly change that. I can see many resources / strengths / competences - you had a business; you're taking it to a tribunal; your grip is still strong - and those are also wonderful images. Your first ship sunk, you're now on a desert island, but alive, and actually more than that: you now have a new business, but you have to learn the tricks of that trade first, with the same fundamental abilities; you're not gonna let yourself be victimized; and parts of you are still surprisingly strong. Actually it's much more & better than a desert island. And it's now about starting afresh, adapting and adjusting, learning to pace, finding your own pace, finding out what you can change and what you need to radically accept, using what you have and strengthening what is weak at the moment. As soon as you get your head round all this, you'll be able to cope much better, you'll be on top of this new thing again, not slipping away, find new ways of keeping in shape (e.g. much shorter but regular stints of everything, starting low, going slow), you'll find that not every task will always wipe you out, find new workarounds to make that better, learn to self-care, find workarounds for your fog, maybe find self-treatments or good gentle listening physios who help with all local pains, and you'll be able to laugh at those foolish people who disbelieve our pain (which is natural, we do it ourselves).

To help us get up and put our crown on again, we can learn mental techniques - mindfulness, relaxation, pain management, acceptance and commitment therapy, so we don't feel desperate, crushed, losing control, because that just makes everything twice as bad. We also may need to grieve first. And then symptom analysis, trigger hunting, trialling all the 100s of kinds of physical treatments, praps diets and supps rather than meds..... So much to try!

 

[sweetkamie20]

Hi, Archie, Sorry I didn't catch you when you first appeared here. Looks like you got some really good advice.

All the feelings you have had are par for the course and, as many have said, those feelings do improve. A lot of people here can relate to the happiness a (negative) diagnosis can bring, frustration that no one seems to get it, the feeling that you are alone trying to reconstruct your life, the uncertainty and fear thoughts of the future bring.

When I showed up here I was startled by my fears of the future. I was going towards a deep depression based on the pain I was in and what my daily life was like. I could see the future getting worse but not see it getting better.

Then I came here and got a supremely helpful piece of advice - one that helped open the door for me to rebuild a life I enjoy: There's no cure for FM but you can manage its symptoms and get better. I'm not saying you get cured but you do get better as you learn about your body and how to make it better.

I see that you have/had an appointment this month. Please update us when you can. Oh, and for humor come see our humor thread revolving around fibro Memes: A Touch of Humor for Us Fibromites

Welcome

 

[Sharkman]

Hey Archie.. same symptoms here since early 2022’ body a wreck now. Neurological issues are concerning too.

I’m not wasting any time and money on “drs“ with their pills and procedures, handing me around to their golf friends. I’m not their cash cow. I’ll try and solve this by reading what others are doing and using naturopaths and nature.

Hang in there Archie, I think distraction is something worth doing while we all try and come up with an answer. Reading, walking… push yourself. Don’t let it win. Stay mobile as much as possible. Fight it brother.

 

[sunkacola]

@Sharkman , I like your post, and agree with you.

Just a couple of words I want to add: Pushing yourself needs to be done with caution, and while listening to what your body is telling you. I think it's important to reach beyond what you think you can do, and at the same time we all know that pushing too hard can backfire.

And....fighting it.....this depends on your definition of fighting it.
If by fight it you mean don't ever give up and always look forward to what you might learn next and try new things and so on, then I agree completely.
But again, with a touch of caution. I like to think of this as something that happened to my body and so my body needs more care than it used to. I do not have to like that! And I don't, not one bit. But I avoid having an actually adversarial relationship with it or my body.

Hope that makes sense.