Seeking Any Guidance - 46 y/o Male

[FibroMike]

For the last part of the year, I've had the below which has gotten worse/better some days but typically 24/7.

- Complete lack of sleep. There are days I don't sleep more than 30 mins-2 hours and it's on/off sleep. I'm taking Lunesta & feel like it doesn't help, at all.
- Wide spread muscle PAIN. Forearms/upper arms/neck/upper back/leg pain/buttocks etc.
- Twitching of my leg muscles pretty consistently
- Headaches/dizziness & eye issues where light sensitivity is a major issue
- Jaw pain, ear pain in both ears
- On/off swallowing issues

I've seen (3) Neuros, (3) Rheums, (4-5 ENT's) and have had every blood test known to man (the last Rheum I saw even said there's no other blood test they could give me), (2) CTs of my neck, MRI of my neck and brain, and an EMG - the only findings throughout this entire journey has been: a) Slightly enlarged lymph nodes in my jugular b) Slight oropharyngeal dysphagia c) Mononeuropathy of a nerve in my left leg.

I even flew to NYC to meet with a very good neuro at Columbia U. The last Rheum that I saw and this past neuro both said - I have fibromyalgia or suspected that I do (as there's no test) and there's no other dx.

I took the test on this page and sure enough the same thing. Calm my fears that something a year later is nefarious going on? And - are there any meds that have helped people get through this? Are my symptoms above very common/or uncommon?

Any insight is so welcome. Thanks for reading my post everyone!

 

[FibroMike]

Oh and slightly elevated CK levels, twice, via blood work

 

[sunkacola]

Calm my fears that something a year later is nefarious going on?

Hi there fibroMike, and welcome to the forum.

Not certain if you are asking us to help calm your fears, or not, or what would calm your fears. But I can say this: a diagnosis of fibromyalgia (which it looks as if you don't have at this point, officially anyway), is not a sentence to a terrible life or progressive worsening of symptoms.

There are many things you can to that will stand a very good chance of lessening the symptoms of fibro if you are willing to do what it takes. The fact that this has been going on for you only in the past 6 months makes me wonder if something other than fibro is causing it, but you say you have had many tests. If it continues, and you still have no other explanation for it, you may be "officially" diagnosed with fibro. Not that this helps you, except for something to put on insurance forms.

And - are there any meds that have helped people get through this? Are my symptoms above very common/or uncommon?

There is a post that addresses many things you can do that will help you to manage this effectively. I hope something there helps you.

As for meds, of course there are some that have helped some people with fibro. Those same meds have also caused horrendous side effects in other people with fibro, and there are some that are highly addictive, causing other issues. No one here can tell you what will work for you. Of course, we can tell you what is working for us, but if you are interested in it you need to do your own real research on the drug and talk with your doctor about it before trying it. Research in this case meaning reading scientific studies on it in published papers on reliable sites, not anecdotal tales alone.

Here's a post that may be helpful to you. Feel free to ask any questions here. People on this forum love to try to help one another and we are kind.

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

 

[FibroMike]

Hi there fibroMike, and welcome to the forum.

Not certain if you are asking us to help calm your fears, or not, or what would calm your fears. But I can say this: a diagnosis of fibromyalgia (which it looks as if you don't have at this point, officially anyway), is not a sentence to a terrible life or progressive worsening of symptoms.

There are many things you can to that will stand a very good chance of lessening the symptoms of fibro if you are willing to do what it takes. The fact that this has been going on for you only in the past 6 months makes me wonder if something other than fibro is causing it, but you say you have had many tests. If it continues, and you still have no other explanation for it, you may be "officially" diagnosed with fibro. Not that this helps you, except for something to put on insurance forms.



There is a post that addresses many things you can do that will help you to manage this effectively. I hope something there helps you.

As for meds, of course there are some that have helped some people with fibro. Those same meds have also caused horrendous side effects in other people with fibro, and there are some that are highly addictive, causing other issues. No one here can tell you what will work for you. Of course, we can tell you what is working for us, but if you are interested in it you need to do your own real research on the drug and talk with your doctor about it before trying it. Research in this case meaning reading scientific studies on it in published papers on reliable sites, not anecdotal tales alone.

Here's a post that may be helpful to you. Feel free to ask any questions here. People on this forum love to try to help one another and we are kind.

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

Thank you so very much for this! Yes - I have been told by a neuro in NYC and a rheum here in Chicago that indeed their suspicion is fibro. The rheum looked at the other testing done - even by other rheums - and told me her suspicion is indeed fibro. She even indicated that there wasn't another blood test or testing she'd recco doing that I've had the "full work up".

This has been going on since September of last year. With that said, looking back - I've had pain my left shoulder for ~4 years, intestinal pain for 6-8 years, and now all over muscle pain/facial pain etc for the last year.

 

[cookiebaker]

Hi Mike, and welcome to the forum.

I would have to say that the symptoms you describe are pretty common to FM, but I am no doctor. And at least you got a diagnosis a lot faster than most of us. I spent more than 2 years going from one doc, to another, getting this test, that test, need more blood please, and so on, and have been suffering a lot longer than that...

I just finally got sick & tired of feeling sick & tired with no explanations... so I started asking why, and did not accept the standard "all a part of getting older" response that I had been given in the past.
I knew there had to be a reason for all of it, and to be honest, I really thought it was under active thyroid (still have suspicions on that front, but that is another forum) until after a couple of gallons worth of blood-work, x-rays, MRI's, even CT scans.. and being seen by this or that specialist, I have finally been given the FM diagnosis. Was a thrilled about it? not really, but at the same time, I now have an explanation for a lot things.

Yes, I do have other obvious physical issues that have come to light through all this... arthritis being a big one, especially in the neck and lumbar regions... but those do not account for all the other things... the all over body aches, the digestive problems, the sleep issues, the neuropathy
I spent several months not sleeping hardly at all, and when i did sleep, it was only for short stints, like you.
I honestly have not had a good, restful, nights sleep in I cant remember when - years... even when i do sleep, i tend to wake up from various body aches, needing to turn over, or make a middle of the night bathroom run (stagger actually, lol)

I have been thru multiple drugs for both neuropathy and GAD (generalize anxiety disorder), and right now, am coming off the most recent one... the side effects are just not worth it to me.

I would suggest trying the more natural methods of coping/controlling the pain & other symptoms if at all possible.. drugs should kinda be a last resort if you can avoid them. Silly me, i went for the drugs first... i should have known better.
There is lots of great info on this forum, and specifically in Sunkacola's advice thread, for things to start out with. Unfortunately, it is an exercise in patience, as in you need to try each thing, by itself, for an extended period to know if it will have any effect - and to be fair, it is pretty much the same with drugs... you start with small doses and gradually build up... it all takes time. There are no "quick fixes", darn it.
But, one day at a time, find what works for you, and if it ends up being prescriptions, then so be it. hopefully not, but everyone is different.

 

[Looby69]

Hi @FibroMike some of your symptoms really resonate with me and are not "typically" associated with Fibro. I too have had lots of testing, seen neuros, rheumatologist, orthopedic consultants. I've had MRI's, Xrays, barium swallow and a whole raft of bloodwork. Nothing shows up.
The symptom you mention, which causes me the most anxiety because of the lack of real association with Fibro, is the swallowing issue.
After my barium swallow I was diagnosed with esophageal dismotility.
I have body wide twitching, including scalp and tongue. I have paraesthesia where it feels like I can feel the hair growing out if the follicles. Its horrible.
I'm on 50mg of Sertraline, but that's to help with my anxiety. I'm also on 50mg of levothyroxine for an underactive thyroid.

 

[FibroMike]

Hi Mike, and welcome to the forum.

I would have to say that the symptoms you describe are pretty common to FM, but I am no doctor. And at least you got a diagnosis a lot faster than most of us. I spent more than 2 years going from one doc, to another, getting this test, that test, need more blood please, and so on, and have been suffering a lot longer than that...

I just finally got sick & tired of feeling sick & tired with no explanations... so I started asking why, and did not accept the standard "all a part of getting older" response that I had been given in the past.
I knew there had to be a reason for all of it, and to be honest, I really thought it was under active thyroid (still have suspicions on that front, but that is another forum) until after a couple of gallons worth of blood-work, x-rays, MRI's, even CT scans.. and being seen by this or that specialist, I have finally been given the FM diagnosis. Was a thrilled about it? not really, but at the same time, I now have an explanation for a lot things.

Yes, I do have other obvious physical issues that have come to light through all this... arthritis being a big one, especially in the neck and lumbar regions... but those do not account for all the other things... the all over body aches, the digestive problems, the sleep issues, the neuropathy
I spent several months not sleeping hardly at all, and when i did sleep, it was only for short stints, like you.
I honestly have not had a good, restful, nights sleep in I cant remember when - years... even when i do sleep, i tend to wake up from various body aches, needing to turn over, or make a middle of the night bathroom run (stagger actually, lol)

I have been thru multiple drugs for both neuropathy and GAD (generalize anxiety disorder), and right now, am coming off the most recent one... the side effects are just not worth it to me.

I would suggest trying the more natural methods of coping/controlling the pain & other symptoms if at all possible.. drugs should kinda be a last resort if you can avoid them. Silly me, i went for the drugs first... i should have known better.
There is lots of great info on this forum, and specifically in Sunkacola's advice thread, for things to start out with. Unfortunately, it is an exercise in patience, as in you need to try each thing, by itself, for an extended period to know if it will have any effect - and to be fair, it is pretty much the same with drugs... you start with small doses and gradually build up... it all takes time. There are no "quick fixes", darn it.
But, one day at a time, find what works for you, and if it ends up being prescriptions, then so be it. hopefully not, but everyone is different.

So very happy that I found this forum and good ppl like you - thank you so much for your story and background!

I want nothing to do with the heavy duty drugs to help cope with this. I've been on Lunesta for the better part of a year but that doesn't really help (I'm moved from 3mg to probably about a 1mg at night) - I've been taking 300mg of Gabapentin at night, and that does seem to help me fall asleep a bit (I actually got 5 hours of sleep last night!!!). Side effects - I have light sensitivity with my eyes (I know it's from the drug, as when I'm off.. it's much less).

I've had the exact same situation as you - Dr's telling me "old age" (I'm a very healthy 46 y/o man), a Doctor telling me "you're just going to have to cope with whatever is going on)... I've had an ENT laugh at me because of neck/throat pain. I've had oodles upon oodles of blood work, (3) CT scans of my neck, MRI of my brain, swallow test, flying to NYC to meet with a head neuro at Columbia U, seeing a few rheums, thinking it was medication related etc; the muscle pain is just frightening and then an EMG showed all was normal outside of a single nerve in my left leg that was inflamed. People don't comprehend how draining this is AND how much anxiety comes from being in constant pain; it's not "normal" or "getting old". Or how much anxiety comes from - sleep anxiety... what a concept I never thought would affect me!

Thank you again for your kind words and support!

 

[cookiebaker]

you are more than welcome - kind words and support are a specialty here =)

I am a 58yr old female - used to drive truck for a living* (18 yrs) but have also done a wide variety of other things, too.
I used to enjoy working on my own vehicles - rarely ever a took a car to a shop, lol
used to love hiking, camping, fishing, swimming, horseback riding, & motorcycles, too.. sadly, have not done any of those things in quite some time. (* i think trucking is where most of the back & neck arthritis came from)

Gabapentin is one of the ones I tried... it got so bad that i was literally falling asleep in my chair at the drop of a hat.. even my partner commented I was looking pretty rough after a while... and that was at a lower dose than you are taking. Nortriptyline gave me tremors, so that had to stop.. Have been on Sertraline (Zoloft) since April this year, and one of the side effects (for me) is hair loss.. now, I used to have really thick hair.. not anymore, tho... and i only just realized that the hair loss started after i started taking the sertraline... there are other issues as well, so the hair loss is not the only reason i am quitting it.

I literally told my primary doc at one point that i should not be feeling THIS BAD at only 58 yrs old - there HAD to be something wrong... well, we finally figured it out.. Now trying to figure out the best way(s) to manage things. Going to take a little time, but I WILL get there - eventually.

 

[FibroMike]

Hi @FibroMike some of your symptoms really resonate with me and are not "typically" associated with Fibro. I too have had lots of testing, seen neuros, rheumatologist, orthopedic consultants. I've had MRI's, Xrays, barium swallow and a whole raft of bloodwork. Nothing shows up.
The symptom you mention, which causes me the most anxiety because of the lack of real association with Fibro, is the swallowing issue.
After my barium swallow I was diagnosed with esophageal dismotility.
I have body wide twitching, including scalp and tongue. I have paraesthesia where it feels like I can feel the hair growing out if the follicles. Its horrible.
I'm on 50mg of Sertraline, but that's to help with my anxiety. I'm also on 50mg of levothyroxine for an underactive thyroid.

I had two ENTs tell me that I had ALS as a direct result of the swallow test. The nuero at Columbia told me absolutely not - all he was seeing was a mono neuropathy of my perineal nerve.

I believe the slight swallow issue I have is from TMD - It can flare up, really cause a lot of pain etc.

Scary though, right? Were you formally dx with Fibro?

 

[JayCS]

Hi Mike,

a suspicion of fibro is "more than" justified with these symptoms and no other explanation...
The test you did on this page is based on the ACR 2016 criteria which say even if there were another explanation it's probably also fibro. sunkacola has assumed you have no diagnosis, as a suspicion isn't a formal diagnosis, cookiebaker you have as you've implied both. The criteria say >3 months and you're close to a year even with your overall muscle pains. (You might consider if like me you did have them off and on before. You also might consider if like me there may have been a trigger like a virus. But both these aren't that important for now or the future.)
You could continue to get a formal diagnosis which I doubt will be hard or you could act upon the suspicion like trying out sunkacola's advice post, or best both at the same time. I have a formal dx of fibro from my 2nd rheum, which has helped me get a few like two weeks fibro clinic, but that didn't help. I have no formal dx for MCAS, because my docs assume I have it, but insurance wouldn't pay for anything anyway. Both diagnosis and suspicion mean I can search for ideas on forums like this and that's been a great deal of help, whilst docs have excluded and harmed, hardly helped.

My experience is to distinguish overall muscle Ache from many local pains, and it helps me greatly to tackle each symptom by analyzing and searching for ideas, mostly disregarding the diagnosis, but using "hypotheses" by being able to get a feeling for and describing the symptoms.

My ideas for your symptoms would be separating the 3 areas: 1) sleep, 2) muscle pain & twitching all over and 3) the local pains which interestingly are all located in your head/neck, even your shoulder is near there.

And then (I'll just list my ideas / take on it, hope that's OK...)
1) sleep lab; identifying & preventing insomnia triggers (me >30); supps if you prefer them to meds....
2) learning to pace, plus various supps, first the typical ones B12, D3, magnesium malate/glycinate (they might all also be good for your perineal/leg nerve, along with praps a TENS unit).
3) dentist (regularly...) to make sure it's nothing radiating and
general manual therapy like osteopathy, chiropractic etc. to find and release blockages in face, neck and shoulder, as well as relaxation exercises. Praps all these are interrelated - what came first?
I've identified 8 reasons for my jaw pain over the last 5 years. My dentists only found something after 4 years, but then it was a drastic inflammation endangering my tooth.
The jaw muscles are the strongest, and mine are the toughest to keep relaxed.
For the swollen lymph nodes: lymph drainage, expert or self-applied (youtube).
For the GI symptoms: Clarify if stomach (e.g. GERD) too, or 'just' gut, clarify if any diagnosis is possible, like IBS, identify food triggers by elimination diet.

As regards "Calm my fears that something a year later is nefarious going on?". Keep checking till sure.
"meds that have helped people get through this?" For me no, but quite a few supps; for others yes.
But lots to try 1) mentally, 2) physically, 3) diet, 4) trigger hunting / preventing too.
"Are my symptoms above very common/or uncommon?": Common, but we all have different weak spots.

 

[cookiebaker]

there are a lot of things that can overlap or co-exist with fibro... IBS is a pretty common one from what I have seen... I do not have a formal dx of IBS, but my meds manager thought i had been.

I am one of those "lucky" people that can choke on air, lol..... for no specific reason - not eating or drinking anything - I will just start into a coughing fit, like i swallowed wrong (which also does happen - frequently) I can also trip over nothing *ie: my own feet*, LOL

Light sensitivity is something I have dealt with most of my life, but it has gotten worse in recent years. I wear sunglasses outside pretty much all the time - even on overcast days. Bright, sunny, winter days are the worst... all that light being reflected off the white snow... gives me a headache just thinking about it. (and it is coming back far too soon for me - i cant believe it is nearly Sept already!)

@FibroMike - I know you have had lots of blood work done, but have you had your vitamin/mineral levels checked?
I specifically asked my primary to check those, including some that are not normally looked at with standard testing- like magnesium, selenium and others, and found both my D3 and Iron levels were low. D3 was very low - 8ng/mL - normal is >30... since getting that brought back up (at 35 now) i am sleeping a bit better.

 

[FibroMike]

Hi Mike,

a suspicion of fibro is "more than" justified with these symptoms and no other explanation...
The test you did on this page is based on the ACR 2016 criteria which say even if there were another explanation it's probably also fibro. sunkacola has assumed you have no diagnosis, as a suspicion isn't a formal diagnosis, cookiebaker you have as you've implied both. The criteria say >3 months and you're close to a year even with your overall muscle pains. (You might consider if like me you did have them off and on before. You also might consider if like me there may have been a trigger like a virus. But both these aren't that important for now or the future.)
You could continue to get a formal diagnosis which I doubt will be hard or you could act upon the suspicion like trying out sunkacola's advice post, or best both at the same time. I have a formal dx of fibro from my 2nd rheum, which has helped me get a few like two weeks fibro clinic, but that didn't help. I have no formal dx for MCAS, because my docs assume I have it, but insurance wouldn't pay for anything anyway. Both diagnosis and suspicion mean I can search for ideas on forums like this and that's been a great deal of help, whilst docs have excluded and harmed, hardly helped.

My experience is to distinguish overall muscle Ache from many local pains, and it helps me greatly to tackle each symptom by analyzing and searching for ideas, mostly disregarding the diagnosis, but using "hypotheses" by being able to get a feeling for and describing the symptoms.

My ideas for your symptoms would be separating the 3 areas: 1) sleep, 2) muscle pain & twitching all over and 3) the local pains which interestingly are all located in your head/neck, even your shoulder is near there.

And then (I'll just list my ideas / take on it, hope that's OK...)
1) sleep lab; identifying & preventing insomnia triggers (me >30); supps if you prefer them to meds....
2) learning to pace, plus various supps, first the typical ones B12, D3, magnesium malate/glycinate (they might all also be good for your perineal/leg nerve, along with praps a TENS unit).
3) dentist (regularly...) to make sure it's nothing radiating and
general manual therapy like osteopathy, chiropractic etc. to find and release blockages in face, neck and shoulder, as well as relaxation exercises. Praps all these are interrelated - what came first?
I've identified 8 reasons for my jaw pain over the last 5 years. My dentists only found something after 4 years, but then it was a drastic inflammation endangering my tooth.
The jaw muscles are the strongest, and mine are the toughest to keep relaxed.
For the swollen lymph nodes: lymph drainage, expert or self-applied (youtube).
For the GI symptoms: Clarify if stomach (e.g. GERD) too, or 'just' gut, clarify if any diagnosis is possible, like IBS, identify food triggers by elimination diet.

As regards "Calm my fears that something a year later is nefarious going on?". Keep checking till sure.
"meds that have helped people get through this?" For me no, but quite a few supps; for others yes.
But lots to try 1) mentally, 2) physically, 3) diet, 4) trigger hunting / preventing too.
"Are my symptoms above very common/or uncommon?": Common, but we all have different weak spots.

Thank you so much for the detailed information!
Fortunately - or unfortunately - I've had a rheum at Northwestern in Chicago dx me with Fibro and a neuro at Columbia in NYC tell me that's his suspicion. I know there's a new blood test out of CA for fibro but I've had a dr tell me ... probably not even worth your time (I'd have to stop one of my allergy meds to do this).

Next step is an appt with another PT, pain lab & then going to see a Chrio as well.

 

[FibroMike]

there are a lot of things that can overlap or co-exist with fibro... IBS is a pretty common one from what I have seen... I do not have a formal dx of IBS, but my meds manager thought i had been.

I am one of those "lucky" people that can choke on air, lol..... for no specific reason - not eating or drinking anything - I will just start into a coughing fit, like i swallowed wrong (which also does happen - frequently) I can also trip over nothing *ie: my own feet*, LOL

Light sensitivity is something I have dealt with most of my life, but it has gotten worse in recent years. I wear sunglasses outside pretty much all the time - even on overcast days. Bright, sunny, winter days are the worst... all that light being reflected off the white snow... gives me a headache just thinking about it. (and it is coming back far too soon for me - i cant believe it is nearly Sept already!)

@FibroMike - I know you have had lots of blood work done, but have you had your vitamin/mineral levels checked?
I specifically asked my primary to check those, including some that are not normally looked at with standard testing- like magnesium, selenium and others, and found both my D3 and Iron levels were low. D3 was very low - 8ng/mL - normal is >30... since getting that brought back up (at 35 now) i am sleeping a bit better.

Yep - I also lovingly was dx with Keratoconus in my late-30s so I know that's a contributor to the light sensitivity. I'm going to have to speak w/ my Dr as the Gabapentin I think is a contributor to the enhanced light sensitivity etc. Sunglasses outside is mandatory - even wear them sometimes inside
I've had some vitamin testing for sure - Iron was good, Vitamin E was normal/low (7.3 > normal range starts at 7.0), Magnesium normal, Vitamin D-25 (32, low normal is 30). I'm sure I could chat with my Dr. about other testing as you've indicated - Selenium/D3 etc.

 

[JayCS]

I know there's a new blood test out of CA for fibro but I've had a dr tell me ... probably not even worth your time

I very much agree. That'd be the FM/a test by EpicGenetics (see here), and it's not particularly new, is not at all medically validated or accepted, as the cytokine and chemokine profile it measures is not proven. Bruce Gillis lost even more credibility last year when he kept coupling it to a study which was going to use BCG vaccine to "cure" fibro although he had already given that other stab in the dark up. "Selling Certainty."

 

[cookiebaker]

Vitamin D-25 (32, low normal is 30)

if your "D-25" is showing as normal, then D3 most likely is as well... note that total and D3 show the same values...
this was from my last check..

but if i check total for all tests this year... back in January, it was really low...

i have my annual check-up coming up in less than a month, thinking i should make sure that D level is checked again to make sure it is still doing ok.