Nerve damage or fibromyalgia

[Metamorphik]

I’m 44 and my head has hurt constantly since I was a child, and I had frequent back and neck pains. By adulthood I just hurt a lot in general. Doctors had said it seemed to be because of anxiety and year round allergies. I do have severe PTSD and am on the autistic spectrum.

I’ve experienced tingling in my feet for many years and tingling got more common in my hands, arms, and legs.
I worked at a smoothie bar for the past seven years, getting increasingly stressed out, and then quit to get a job in the wares section at a very big and very busy thrift store.

The work was extremely rough. After nearly two weeks, I woke up on Thanksgiving with horrible tinging and numbness all over, especially in my hands and legs. I pushed through a few more days and ended up going to the emergency room on my last day off (yesterday). I told the doctor my past and all my symptoms, and asked if it sounds like neuropathy. Since he’s not a specialist he couldn’t test or fully evaluate me (I hope to eventually see one, and get an MRI or whatever it takes.

I’m wondering if it seems likely to be fibromyalgia. My symptoms have been constant over the years but sometimes seemed like overall flareups that often happened during extra stressful times and times of really bad allergies.

I hope there’s any chance that this is at least not progressive, and that it is just a flareup lingering from very hard manual labor, stress, and lots of dust in the air. If I’m always going to be affected this badly and even worse, I don’t know how I’ll live or even want to live. Sorry that this is so long but if anyone has similar experience, I would very much appreciate any replies.

 

[sunkacola]

Hi @Metamorphik , and welcome.
This could be fibromyalgia, or it might not be, and of course no one here can tell you one way or another. I encourage you to keep investigating because you won't really know unless all the other things that it could be have been ruled out.

Fibromyalgia itself is not progressive. But, at the same time it can get worse, which sounds like a contradiction but is not. As we age, our bodies don't handle many things as well and we tend to get weaker, so that will make it seem as if the fibro is worse. Additionally, if at any age a person stops doing certain healthy things -- especially activities -- because they hurt or the cost you pay for the next 3 days is too great, (or stop eating well because comfort food is more desirable), then the muscles or other systems will get weaker and of course that will in turn cause other problems, which will make everything worse, although it is not really the fibromyalgia being a progressive disease.

Many people can help the fibro symptoms of various kinds not to get worse over time by clearly identifying triggers to pain and living the healthiest lifestyle possible. For each person, that healthy may be different. for instance, for some it is eating vegetarian, for others it is eating enough meat every day. A methodical investigation and program of experimentation will lead you to what works for you.
I wrote a post about this....maybe it will help you. It helps a lot of people if they are diligent about getting to know their bodies and managing the fibro to the best of their ability.

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

 

[Metamorphik]

Thank you very much for the reply. Everything you said makes a lot of sense. Thursday I’m going to go to get a referral for a specialist, however long it takes to see one, and that specialist will probably refer me to a neurologist, however long it takes to see one, but I’m definitely following through.

The constant sensations and occasional extra bad flare-ups have gotten worse and worse over the years, but along the lines of what you said, a lot of it could be because I’ve done such stressful, exhausting work for years and years, feeding the symptoms. I’m fortunate to live in income based housing and to have a fair amount saved up, so I’m not working at all for now, and am just focusing on my wellbeing. Thanks again and take care.

 

[sunkacola]

You are welcome. And good that you are focusing on your wellbeing.
For those of us who have spent out lives working and taking care of things, not having anyone to do any of it for us, it is hard to get to the point of recognizing that the time has come to quit. Most of the jobs I did were physically and mentally challenging, especially the business I owned and operated for the last 10 years before I retired. It was the most physically and simultaneously emotionally challenging of all of them. something like being each day a hard laborer, a social worker, and a psychotherapist all at once. My pain kept getting worse and I kept working. Finally I realized (and I am so grateful that I did) that I had 2 choices:
I could keep working until my body gave out completely and then I wouldn't be able to do any of the things that bring me joy,
Or I could stop and take care of my body and maybe have more years of physical activity that was fun for me.

I retired, and have never looked back. Sadly I only got a few more years of being able to do my favorite physical activities, but at least I got that.
Hang in there and, post whatever questions -- or complaints -- you have. We are here to support each other.

 

[Artizane]

Dear Metamorphik

It is imperative to see a neurologist - they will test for any nerve damage or progressive nerve issues - and rule out various afflictions as they go. The quality of your neurologist is the key - and how far they are willing to go to nail what you've got. You've also got to make a decision about how much investigation you want to undertake as these get more and more invasive and exhausting. The first step is usually a physical exam where they study gait and pain points and strength and mobility/feeling in limbs etc., an MRI of your brain and spinal cord, and sometimes a cognitive test. After that if they can't find anything they may go to nerve studies, or other options to rule out various neurological diseases. it may also be useful to do a full bloodwork study - which will tell you what pathogens you've come into contact with during your lifetime and whether you have chronic inflammation in your body, all of which can be triggers for ME/Fibro. If you do have Fibro they'll usually diagnose that fairly quickly - and if they can't find anything else they may saddle you with Functional Neurological Disease or FND - a stress/trauma related condition where your brain is constantly turning on fight or flight/dialling up the signals it receives through your pain pathways (e.g. the pain is real, but its your brain creating it because of a sort of software glitch). Regardless of the diagnosis - the treatment usually consists of a variety of neuropathic pain inhibiting medications, gentle physio, and pacing, which is a way of making sure you manage life within the boundaries of your illness. It can also really help to switch to a plant based diet - something I have struggled with but am trying to stick to - as this reduces inflammation and has a range of other health benefits.

Please let us know how you go. As Sunkola says - we are all here to support you.

 

[Metamorphik]

Dear Metamorphik

It is imperative to see a neurologist - they will test for any nerve damage or progressive nerve issues - and rule out various afflictions as they go. The quality of your neurologist is the key - and how far they are willing to go to nail what you've got. You've also got to make a decision about how much investigation you want to undertake as these get more and more invasive and exhausting. The first step is usually a physical exam where they study gait and pain points and strength and mobility/feeling in limbs etc., an MRI of your brain and spinal cord, and sometimes a cognitive test. After that if they can't find anything they may go to nerve studies, or other options to rule out various neurological diseases. it may also be useful to do a full bloodwork study - which will tell you what pathogens you've come into contact with during your lifetime and whether you have chronic inflammation in your body, all of which can be triggers for ME/Fibro. If you do have Fibro they'll usually diagnose that fairly quickly - and if they can't find anything else they may saddle you with Functional Neurological Disease or FND - a stress/trauma related condition where your brain is constantly turning on fight or flight/dialling up the signals it receives through your pain pathways (e.g. the pain is real, but its your brain creating it because of a sort of software glitch). Regardless of the diagnosis - the treatment usually consists of a variety of neuropathic pain inhibiting medications, gentle physio, and pacing, which is a way of making sure you manage life within the boundaries of your illness. It can also really help to switch to a plant based diet - something I have struggled with but am trying to stick to - as this reduces inflammation and has a range of other health benefits.

Please let us know how you go. As Sunkola says - we are all here to support you.

Thanks for the response. Getting help to pay out of pocket, I actually saw a neurologist today. I go back Wednesday for a nerve conduction test. I’m on a list to eventually get a head MRI through a charity based organization but I’m going to ask him if he can arrange to have it done sooner than they can, since I’m getting help paying for things. With that said, there’s only so much I can afford for now. I don’t think I’d heard the name for FND before but that definitely seems like a possibility, since my youth was back-to-back psychological trauma and I’ve lived my whole life in fight or flight mode.

 

[sunkacola]

If you do have Fibro they'll usually diagnose that fairly quickly -

That would sure be nice, but it has not been the experience of most people here, some of whom have been tested for various things for years before receiving a diagnosis. It really depends on the doctor(s). Some, including specialists, still don't even believe that fibro exists and will just dismiss people out of hand or send them to a psychologist.

It can also really help to switch to a plant based diet - something I have struggled with but am trying to stick to - as this reduces inflammation and has a range of other health benefits.

It should be noted that a plant based diet is not a remedy, nor is it appropriate for everyone.

Eating a plant based diet is something that is definitely worth trying, in order for a person to determine whether or not it is helpful to them. But it is not helpful for everyone. It depends entirely on a person's constitution whether or not they will even be healthy on a plant based diet. For some people, not eating meat is an unhealthy choice for their body. This is something that each individual needs to determine for themselves.

 

[Metamorphik]

I’m not an expert of course, and I know that nobody completely understands fibromyalgia or what causes it, but I kind of wonder if fibromyalgia isn’t just one condition, but several similar conditions. It seems that usually, after a lengthy process of elimination by doctors, fibromyalgia is “other”.

 

[sunkacola]

I’m not an expert of course, and I know that nobody completely understands fibromyalgia or what causes it, but I kind of wonder if fibromyalgia isn’t just one condition, but several similar conditions. It seems that usually, after a lengthy process of elimination by doctors, fibromyalgia is “other”.

Actually, this is what I tend to believe is true.
I think it is entirely possible that at some point in the future, what is now lumped together as "fibromyalgia" will be parsed out and broken down into several different things that co-exist in people. And when that is possible, I think there is a greater possibility that there will be effective treatments for those things.

 

[JayCS]

if fibromyalgia isn’t just one condition, but several similar conditions

what is now lumped together as "fibromyalgia" will be parsed out and broken down into several different things that co-exist

Yup, I agree with both. I often feel fibromyalgia as subgroups, different varieties in us that overlap.
But these ideas to me seem to be a nuance different, and just as viable.
Or perhaps more so, if we emphasize the differences more than the overlap.
Impossible to tell as yet

• if there are a set of root causes that have a different impact on individuals according to their make-up and co-morbidities, and/or
• if as Metamorphik you are in part suggesting that there may be different sets of root causes, justifying talk of different conditions, and/or
• if as sunkacola you are praps slightly leaving open whether these "things" co-exist in one individual or praps in various individuals. As co-exist tends to imply in one individual there may be another complementing term for that or praps that'd be back to possibility 1? I like the neutrality of saying "things", it makes sure we aren't too precise in our concepts.

 

[Metamorphik]

I had an EMG done today, and it showed no large fiber neuropathy and no pinched nerves. Tomorrow I’ll have a biopsy done to check for small fiber neuropathy, and sometime soon I’ll have a brain MRI done. Exhausting and expensive, but I’m glad to be getting somewhere with this.