Undiagnosed but thinking I belong here

[JCEBV]

Greetings to the Group:

I am a 50 year old male with a long history of musculoskeletal complaints and some admitted health anxiety. I've been doing well with both for a while now but have had a recent setback. I have a long history of muscle pain, back pain, hip and groin pain, tremors, spasms, twitches etc. I just had my physical and discussed my recent symptoms with my Doctor who is not overly concerned. I'd like to tell you my current symptoms and my work up and see if anyone can relate and if I might have this syndrome.
I've been dealing with a lot of the muscle pain in my mid to lower back for weeks, months now, seems like a bad flare. In addition to that over the past weeks I have been experiencing widepread tightness and a stiffness and precramping sensation in several muscles, forearms, back, neck, calves and hamstrings. The hamstrings are especially painful and hard to loosen. I have decent flexibility still when I do my stretches but the feeling won't stop. I just feel like I am going to cramp up and/or pull a muscle, but neither have actually happened. I am having muscle pain in both legs, forearms, calves and neck muscles.
I just had some xrays of the back hips and sacroliac joints, no major issues but some mild out of alignement type stuff. I am seeing a chiropractor who is helping with the groin pain by releasing the psoas muscles which are very tight.
I am also recoveirng from a recent episode of Non Bacterial Prostatitis (which is considered by many to be a condition stemming from chronic muscle tension in the pelvis)
My recent workup includes MRI of the Brain, Inflammation marker tests Sed Rate, Lyme, C Reactive and HLA B27 all normal
Recent(2 years) normal colonoscopy and Endsccopy)
Comp metabolic panel and hemogram with differential basically normal. (Mildly elevated Calcium, highest level of still normal range)
Normal Urinalysis
Low but normal B12
Normal Vitamin D (previously deficient) I take 5000 IU per day.
Normal Magnesium (this was 6 months ago)

Is this a sufficient workup?
Could this be Fibro?
Best,
JC

 

[JayCS]

Hi JC, and welcome!
To me it sounds as if you may be going in the direction of fibro, but if you find the right manual therapy (expert and/or self), exercises/stretches, heat/cold etc. for each local pain you could improve or even reverse them.
The workups seem quite OK to me,
but there'd normally need to be a lot more than local pains to be going on for it to be fibro, things like fatigue, fog, gut & sleep problems...
However you do belong here if you want to share ideas to try to get more control of your symptoms - and esp. if you yourself feel you belong.

 

[JCEBV]

Hello and thank you for the reply and the kind words. With the pain and tightness so widespread it seems systemic rather than local to me but who knows? I do have stomach issues quite frequently and days where I feel very fatigued, although most days I have good energy. I have no issues getting through a work out routine or walking 2 miles on most days but lately the tightness is just bothering me, physically and mentally.
I am definitely focusing more and more on stretching.
I am wondering if others can relate to my symptoms? With the health anxiety part, I am always looking for reassurance, and of course ideas on symptom relief etc.
Thank you!

 

[BlueBells]

Hi @JCEBV

Welcome to the forums

Heads up. To send a message, put the @ symbol before the name, and they will definitely get the alert

Look up the "Do I Have Fibromyalgia?" forum, and the first thread "Free Fibromyalgia Test" . Worth a check if you haven't already done so.

I'm sure you have already, but drift around the site and feel free to comment on those threads that you feel you connect with.

You are amongst friends here

 

[JayCS]

With the pain and tightness so widespread it seems systemic rather than local to me but who knows?

Well yes, they might well have a systemic cause, whether fibro or something else. Thing is it's unlikely to find a systemic treatment, only some of us are lucky to find things like some med that reduces symptoms, more by suppressing than "cure".

So to get those down at all, it's still necessary to treat each symptom singly, even tho they are probably connected and praps systemic.

I use "local pains" to distinguish from "overall pain/Ache" in all muscles at the same time from overdoing it. My local pains are something that I've managed to whittle down to pretty much zero, but because there is something systemic behind them, I've always got to keep on my toes for anything coming up again or newly, and zero tolerance for them, to nip them in the bud, serves me best.
To me it seems a combination of the systemic bit with the weak spots in my body.

Stomach and gut issues are also things we can work on singly, like stomach might be from hyperacidity or hypoacidity. Eliminating unhealthy foods and then certain groups of foods can help with all GI issues.

Fatigue on single days, but able to do a workout sounds good and it seems "overdoing it" is not too much your issue. But sunkacola' advice post here may still help you, at least in parts - good basic stuff whether fibro or no.

 

[JayCS]

My local pains are something that I've managed to whittle down to pretty much zero, but because there is something systemic behind them, I've always got to keep on my toes for anything coming up again or newly, and zero tolerance for them, to nip them in the bud, serves me best.
To me it seems a combination of the systemic bit with the weak spots in my body.

I got an example for multiple local pains coming up today, due to taking too much of my blood pressure med in too short a time. (The mechanism seems to be that that increases histamine which decreases serotonin.) It was around 5 sort of "new" ones, but my typical weak spots - or maybe all spots get weak? Hand, knees, ribs on either side... Each of them I pressure-massaged down as soon as they came up, so they don't / couldn't build up. In this case I could pinpoint it was the med/histamine, cos I was feeling increasingly dulled in body and mind and got a slight sinus headache / migraine, all one kind of my various histamine reactions. So in this case like generally I knew that histamine vs. serotonin was the systemic cause, still worked on each pain singly but may now increase GABA for more serotonin and less histamine a bit this evening until it wears off. GABA does generally help me in many areas, so systemically, but far from cure.
Systemically I'm now wondering why the blood pressure med via increasing histamine seems to temporarily completely neutralize the positive effect of the L D N that I've been having since starting it, which is 'homeopathically' inciting endorphine production. Something to do with cortisol, histamine, generally neurotransmitters / hormones I spose...

 

[JCEBV]

very interesting

 

[JCEBV]

So I've noticed these symptoms as the week has progressed. My hamstrings and calves continue to be very tight and painful moreso on the left. I've had moments where I feel they are loose from stretching and walking but it seems to creep back. Earlier in the week the pain was more severe and achy almost all evening. I think there is a big crossover between anxiety and fibro from what I am reading. I do notice that when I focus on this less, ie get busy at work or distracted it seems less, but the pain and stiffness is so widespread I get very few moments like this. If I bend over the pick something up the muscle in my back or side might temporarily tighten. If I am driving and move my leg, the quad or calf or hamstring muscle might temporarily tighten. Both forearms hurt on the muscle on top near the joint as well as underneath just in the muscle. My neck muscles feel like they will pull (which has happened to me many times chronically over the years) nothing new here. If I work on the computer with the mouse, wrist gets tight and stiff especially when it's colder. Tricep muscles seem like they are tight and ache as well.
It seems hot baths help for a bit, In general heating pads help. I tried ice then heat on the hamstrings which helped. I have started taking magnesium which will hopefully help.
I guess my biggest challenge right now is questioning, what exactly is happening to me? Will it get worse? Is it something more serious/progressive?
I feel common sense suggests that with my recent medical workup, i should be able to relax a bit, but I'm struggling. In addition to the workup I posted I saw a Neurologist in June and had an unremarkable exam.
Who can relate to my symptoms? The interactions are helpful. thank you.

 

[JayCS]

Cos of this topic I've been musing about my "zero tolerance policy" for my pain vs. my high "pain tolerance".

I've always been able to ignore and push thru pain, whether local or overall (e.g. hard physical work despite flu).
But when they build up too far, each local pain reduces joint movement, overall pain reduces movement via energy.
That's when it makes no sense to push thru, if there ever was any sense in that.
I started learning to treat local pains immediately a long time ago:
If I got/get a shooting pain from injury (like sports), simply resting that area for a minute can be enough.
If I counterstretch/-ed a strained arm during table tennis for half a minute, praps repeat that, it can be enough.

(Maybe off-topic, just occurred to me: I played soccer with colleagues up to about 7 years ago, me the oldest. I loved it, despite getting one injury after the other (between 4 and 12 injuries in one single game), some took months to get down, most a few days, but my fibro was coming up, and I started feeling ill for 2 days afterwards, not just sore muscles. Didn't stop me playing, but kinda happy & sad when they stopped. But that feeling sick was I guess was one of fibro's harbingers... - when I thought it was just age.)

So when fibro started, all my old local pains and more came up, all the weak spots, adding to the overall Ache...
Muse ended...

 

[JayCS]

I think there is a big crossover between anxiety and fibro from what I am reading. I do notice that when I focus on this less, ie get busy at work or distracted it seems less, but the pain and stiffness is so widespread I get very few moments like this.

Hmm, some would ask if you are the kind of person whom reading around doesn't help, but harm?

wrist gets tight and stiff especially when it's colder. Tricep muscles seem like they are tight and ache as well.
It seems hot baths help for a bit, In general heating pads help. I tried ice then heat on the hamstrings which helped.

Just an aside: ice hurts me, but cold water is fine for 2x30'', wash or shower.
(I did whole body cryotherapy for over a year, that's 3' at -110 to -150°C. It often gave me energy, but after finally stopping and doing it one more time, I saw it caused neck and knee pain.)

I have started taking magnesium which will hopefully help.

Magnesium malate or glycinate are the best forms for fibro type pain, and under the highest normal dose isn't normally laxative for anyone.

I guess my biggest challenge right now is questioning, what exactly is happening to me? Will it get worse? Is it something more serious/progressive?

I'm wondering whether your biggest challenge is (to decide to and find out how) to stop questioning what exactly is happening and worrying?
Quite a few of my local pains, esp. jaw, are increased by "normal" life strain.
Working on that by learning intense relaxation has shown me that the strain is part of the cause, so contributes.

I feel common sense suggests that with my recent medical workup, i should be able to relax a bit, but I'm struggling.

Have you learnt and applied all the various relaxation techniques yet, like progressive muscle relaxation, autogenics, body scan, mindfulness, breathing exercises etc. or yoga nidra as a combination of a great variety of them?
All self-treatment exercises like stretching can be relaxing too, but only if we actively make sure of that.
It sounds as if you could do with actively working on relaxing instead of expecting it to come by itself.
Also personally I'd go deeper to find out why and work on all the worry. After doing that I don't worry about any health issues any more, not even things like cancer of any form. (Social phobia was a major issue for me, so I very well know how anxiety works.)
Worrying of course makes everything worse and wastes all our energy we'd need for getting something done about it, so is the one starting point to work on, to get better. We all know that, but need to find a way to jump out by focusing on it in a healthy way and maybe getting help to do so.

In addition to the workup I posted I saw a Neurologist in June and had an unremarkable exam.

Did they do an EMG and any deeper stuff?

 

[JCEBV]

Hmm, some would ask if you are the kind of person whom reading around doesn't help, but harm?

Just an aside: ice hurts me, but cold water is fine for 2x30'', wash or shower.
(I did whole body cryotherapy for over a year, that's 3' at -110 to -150°C. It often gave me energy, but after finally stopping and doing it one more time, I saw it caused neck and knee pain.)

Magnesium malate or glycinate are the best forms for fibro type pain, and under the highest normal dose isn't normally laxative for anyone.

I'm wondering whether your biggest challenge is (to decide to and find out how) to stop questioning what exactly is happening and worrying?
Quite a few of my local pains, esp. jaw, are increased by "normal" life strain.
Working on that by learning intense relaxation has shown me that the strain is part of the cause, so contributes.

Have you learnt and applied all the various relaxation techniques yet, like progressive muscle relaxation, autogenics, body scan, mindfulness, breathing exercises etc. or yoga nidra as a combination of a great variety of them?
All self-treatment exercises like stretching can be relaxing too, but only if we actively make sure of that.
It sounds as if you could do with actively working on relaxing instead of expecting it to come by itself.
Also personally I'd go deeper to find out why and work on all the worry. After doing that I don't worry about any health issues any more, not even things like cancer of any form. (Social phobia was a major issue for me, so I very well know how anxiety works.)
Worrying of course makes everything worse and wastes all our energy we'd need for getting something done about it, so is the one starting point to work on, to get better. We all know that, but need to find a way to jump out by focusing on it in a healthy way and maybe getting help to do so.

Did they do an EMG and any deeper stuff?

Jay, what a wonderful and thoughtful response. I will be reading this back and properly digesting.

you wrote:

Hmm, some would ask if you are the kind of person whom reading around doesn't help, but harm?

this is a very good question and I have posted to various boards over the years. I am interested in body physiology above and beyond my own symptoms and I like to hear about others experiences. Generally, I like to be well educated. With respect to my own symptoms, when I hear about people with a similar constellation of symptoms, it definitely helps me.

you wrote:
I'm wondering whether your biggest challenge is (to decide to and find out how) to stop questioning what exactly is happening and worrying?
Quite a few of my local pains, esp. jaw, are increased by "normal" life strain.
Working on that by learning intense relaxation has shown me that the strain is part of the cause, so contributes.

I think you are on to something bigger here, but that will be tough to overcome with my mindset. It is nice to consider that some/most of my current symptoms are "only" from normal life strain, and honestly I won't rule it out.
I have looked into the some of the techniques you mentioned before and have attempted them without much success. I need to invest additional time here as I think it could be helpful.

I would love to learn more about how you overcame worry. Worry is something built into me for 50 plus years (even as a child) I know logically it offers zero benefit and only harm, but I have always been plagued with it.

 

[JCEBV]

Oh and I had an EMG like a decade ago when I first encountered the ALS fear that many people experience. Have had many many years ofmuscle twitching issues and odd sensations. I do not think my Neurologist (I saw her last in June because I have a benign stable Pituitary lesion) would repeat it on me. I had normal exam at that time.
I guess if she thinks it is unnecessary, I should as well.

 

[JayCS]

I guess if she thinks it is unnecessary, I should as well.

Yep, definitely ain't something you do for the fun of it...

 

[JayCS]

With respect to my own symptoms, when I hear about people with a similar constellation of symptoms, it definitely helps me.

OK, that's good to hear, and possibly similar to me, not sure?
For me, knowledge is comfort. It doesn't help me if others have the same. I'd've thought that's better for people who are more passive, but no idea if that'd apply to you, doesn't sound like it. Personally like in the serenity prayer I want to know what I can change and change it and what I can't which I've learnt to radically accept. And then there's always the impatient part of me whenever there's a slight standstill that keeps asking: what more can I do? Sometimes I do just ask what more can I know and accidentally finding things I can do. But usually that's motivated by people asking what they can do about symptoms and delving into their story, comparing with mine to learn about mine, but never as an end in itself, always with the purpose of helping.

I think you are on to something bigger here, but that will be tough to overcome with my mindset.

You're not meaning your mindset is "set" forever, are you?
Have you looked into ACT, Acceptance and Commitment Therapy, with their concept of radical acceptance? Our mindset are only our thoughts and our feelings, it is not reality, and we can learn to separate ourselves from it.
(They're offering an online course in this in Germany for people with fibromyalgia and other chronic pain conditions. I took part in its "clinical trial", altho they couldn't teach me much. As a result of the trial it's being payed for by all insurances here now.

It is nice to consider that some/most of my current symptoms are "only" from normal life strain, and honestly I won't rule it out.

And then - what do you do with that?

I have looked into the some of the techniques you mentioned before and have attempted them without much success. I need to invest additional time here as I think it could be helpful.

I'm with you there, I used to have big difficulties, and when I tried progressive muscle relaxation again in the fibro clinic it seemed I was the only one whom tensing the muscles hurt, which I found strange. (I was often the oddest one out tho.) One part of having success tho is I think to realize that you have to try to make them work to get better. That can mean to adapt them to your body. Funnily I can do all relaxation exercises well for others, but not well for myself. What I need is the quick guidance of yoga nidra/NSDR, so my overactive mind has enough to do.

I would love to learn more about how you overcame worry. Worry is something built into me for 50 plus years (even as a child) I know logically it offers zero benefit and only harm, but I have always been plagued with it.

Yeah, of course the logic that it harms and doesn't help can only help increase the motivation to do something about it - for people inclined the knowledge alone can even increase the worry (though I've never experienced this worry/fear of worrying/fearing).

Yeah, it usually starts in childhood, mine too. I started early in trying to overcome it, but it grew, mainly cos I got too close to other people that "believed in worrying".

How I overcame worry/anxiety/phobia is a long story, part of which I've often shared here, maybe this post is the most fitting one. if you search for "face - accept - float - let time pass" you'll find others, including a long thread about motivation which is probably "too much"...

In short, talk therapy, books and most of all online support groups helped the biggest bits of social phobia, then severing myself from my relationship co-dependency allowed me to be more stable and independent in relationships and social situations (one of Melody Beattie's books was brilliant, the rest boring), and finally finding my own adaption of mindfulness for my fear of heights cured that and by a kind of analogy helped >10 other types of anxiety like stage fright....

 

[JCEBV]

Jay, thank you for supplying more information for me to read and ponder. I will definitely read your post about how you overcame worry.
I had a decent weekend actually. I left work on Friday and booked a deep tissue massage (something I haven't done in years). I was amazed at how much of my tension was relieved by this. I felt almost normal all the way into Saturday. Some tension, pain and tightness crept back in over the course of the weekend, but that period of relief was very beneficial for me physically and mentally. Had a great Sunday hanging with friends, not thinking about anything really. Here's to a productive week!