Forum

Fibro or MS... or something else?

New diagnosis and before diagnosis
#1

Hi… New here but had to try find a few answers if anyone can comment.

I’ve been having aches and pains for a good few years now and the doc insists its Fibro… but recently it’s got much worst to the point where it’s really driving me mad!

Just been to the field with the dog and the ball… throwing it is causing me so much pain (feels like all my joints are lose and clicking) and I know I’ll just seize up now I’ve got back and have pain for the next few days… 2 months ago I used to go to the gym but have stopped… I was finding my muscles swelling up instantly and was in quite a bit of pain… I’d come down on the weights from 80 kg to 70 kg to 50 kg over about 2 years anyway as I’d lost stamina… only thing is, you come down, you can never go back up, it’s a one way deal…

I also have a split 6 pack from a good few years ago… I think that could have started my problems or maybe was the first weak part to go when I didn’t realise I had something… I ripped it on a trip to China carrying two very heavy bags on a train that jolted… thought someone had stabbed me, sat down for a bit and the pain went so just carried on… was only a few days after I realised I’d pulled my 6 pick in two…and the pain / fibro / MS tends to hit this… making my abs swell… can this happen… can it hit weak points more? It feels like my insides are falling out as I think my muscles are so weak here. I’m also having a bit of trouble breathing now… Tight and can’t get a full breath… and I only have to do a few things in the garage and I’m sweating… It’s like my muscles are just fading away?

I just hurt like hell everywhere… Tingles in the arm and legs have come on over the past 4 weeks also… Great… I have been cold in the past… dizzy spells, can’t think…

But, I don’t have the typical Fibro issues… I don’t have any tender points on my body… I don’t wake up feeling tight and can’t move… In fact, mornings are a good time… its only as the day goes on I get burning around my spine, aches and pains in my back / front / legs, tired etc… Fog not too bad… No headaches ever… Did have a nap mid day as I can’t get through at weekends without one?

Been for lots of tests and scans but all inconclusive… but my Doc wont send me for a tap or a MRI head scan because he knows better?

So, is it Fibro as the Doc says?.. I think I tick more boxes for MS or even ALS? Would be good to check notes with someone else as I think my wife is getting very fed up of me going on about it… how every day it’s something else I can’t do or hurts :grin:

Thanks for any comments… John

#2

Hi John.

You won’t like this but here goes.

Anyone who diagnoses MS, or any other condition here, will be jumped all over by the Moderators and quite rightly. It would be criminally stupid for anyone to even offer an opinion as to what your condition is.

If you don’t like what your GP is telling you then get another doctor but don’t ask untrained, non professionals to do their job.

That’s like asking Mary Berry to do an aircraft preflight safety check. Except a lot more dangerous.

Best wishes,

John.

1 Like
#3

Hi John

With the greatest of respect… I’m not asking to be diagnosed… The question is… has anyone had experience where MS appears to target and injury / weak point… and I asked to swap notes on my post?

For sure, the issue with the doc is all mine and I’m trying to sort this out… the longer it goes on without finding the cause could obviously be detrimental.

I thought that’s what forums were for … If I’ve got it wrong then I’m obviously in the wrong place… just reading other post, people do appear to be asking to compare notes on issues?

John

#4

Hi John,

I apologise for my blunt response if I’ve misunderstood your query.

I understand the frustration of being without a diagnosis and it’s understandable that you are asking other people if your symptoms are comparable with those who have been diagnosed.

It’s a truism that everybody’s MS is as unique as their nervous system. The disease has effects on the cellular level, so even comparing two people with the same “class” of MS is pointless. We can only generalise with regard to how each one of us responds to the demyelination.

I don’t know how many neurological conditions there are. Even MS is divided into four sub-categories so I can’t understand what benefit you would get by comparing your symptoms with anyone else with similar symptoms. The results would be meaningless.

That’s only my point of view. I would be genuinely interested in the opinion of others.

Best wishes.

John

#5

Yes… no problem… and for most people i think the initially present with a numb arm, or one leg not working right… or, if you push above one eye, the other eye can see more red colours, so on an so forth…

My symptoms are in both legs… or I’ll get tingles in both hands… or both sides of my rib cage hurt… not typical of MS either I guess…

Been to the doc again today and she’s agreed to do some more blood tests next week…

Thing is, it’s all driving me mad!.. and the worst bit is, no one appears to know what it is so to some extent they lose interest?.. at least with a diagnosis, I’d know what I was up against and what to work on… but right now, things just get worst every few weeks, or maybe every couple of months.

see what the bloods say and then she said I could go back to the neurologist or maybe try some arthritic doc’s see what they say?

Thanks for all your help anyway… sometimes its just good to talk with people in similar situations… telling the wife all the time is not the best option and she get fed-up for sure.

We have another family member with MS, but she’s in denial and wont talk at all… My daughter did the London marathon this year for MS and raised over £3K… it was a fantastic day !!.. so let’s hope with everything being done right now, we can soon get some answers and help on all these types of issues

#6

Just adding that there is no test for MS, there is only time plus the expert opinion of a Neuro. Even with a history of lesions in the past and a disabling attack of new neuro symptoms and large new lesion on my spine, it took 8 months for me to be diagnosed. They have to exclude all other possibilities. So the main problem for you is the lack of dx and the not knowing and you can do something about how you feel about this which will benefit you whatever it turns out to be, or even if you never find out. I know I sound like a broken record on this, but it’s only because I wish I’d done it sooner myself, but mindfulness really helps. It teaches you to live in the moment and not be overwhelmed by ‘what ifs’, and it helps you deal with the physical effects of whatever is going on with your body. I’m categorically not telling you this because I think it’s all in your head or because I think you are a hypochondriac or anything like that, it genuinely helps to rewire your brain to cope better with ongoing physical symptoms and is as important as physical therapy. Best of luck

#7

Yes, I agree fully… until this kicked off, I’d never been to the doc’s and was always being told off for not going!.. nearly lost a leg once when I got an infected bite and was just hoping it would go away… when I eventually did go to the hospital, they said it was a good job I’d come in that day… another couple of days and they’d be taking it off LOL… so I don’t… or didn’t tend to complain about the things I get…

But also, I’m an engineer… and I think that’s part of my problem here… I’m very analytical about things… so its as much intriguing as it is day to day annoying to have these symptoms and not know what it is…

I live my life for the moment for sure… I’m still travelling with work, riding my motorbikes, mending the car, going to the pub with my mates… but it’s the having to pace yourself… take a nap… don’t do too much…don’t drink too much as 1 pint is now like 5 used to be… that keeps it to the front of your mind…

O well… will have to see if the next round of bloods show anything… I’m sure they won’t but who knows… as you say… just keep on living for today…

#8

I’m the same. Getting used to all the uncertainty is really difficult for me. Do let us know how things go for you.