Not Sure What It Is But It’s Not Pleasant.

SteveH

New member
Joined
Jul 22, 2020
Messages
1
Reason
DX FIBRO
Diagnosis
10/2018
Country
UK
State
LN
Hi All,

I’m not 100% sure what’s going on and am hoping for a little light

I have recurring symptoms which have happened about 5 times in the past 2 1/2 years, they usually seem to occur with the advent of stress. Initially it was major stress and recently it seems to have been triggered by less stressful (but still stressful if you get my drift) situations.

2 years ago I was checked by the doc, had a few tests and MS was ruled out and Fibromyalgia suggested, all he offered was a self initiated Cognitive Therapy Group that I didn’t pursue as was too anxious to follow it through.
I don’t have arthritis either.

My symptoms start mild and build up, they last around approx 5 weeks to 10 weeks with the intensity increasing. I’m currently at 4 weeks and am getting the following:

Tight muscles with muscle burn in biceps, forearms thighs and calfs
Joint aches, especially hands/fingers
Neck ache at sides and top of spine
Constant Crepitus in neck, knees and elbows
Pain in neck (bearable) also stiff
Shoulder pain, both sides
Tight facial muscles
Blurry vision that comes and goes
Depersonalisation - totally spaced out at times, this comes and goes, head feels fuzzy almost electric
Fatigued but not hugely
Wake in the mornings unrefreshed
Sleep pattern is interrupted, regularly wake at 2.30/3am

I do have a genetic disorder HLA-B27 that can affect tendons but unsure as to what degree.

So there’s a bit to go on 😁, I’m not feeling anxious I don’t think.

Yoga is helping and so is wine/beer(I know.....).

I’m just sick of it to the point of borderline depression(I was diagnosed with depression about 18 years ago but that was following the death of my lovely Gran). It does rear it’s head every now and then though. I’m also a firefighter and have seen a few things I’d rather not, a couple of them come back every now and then, plus recently divorced and only get to see my daughter once every 2 weeks plus my ex-wife can be very difficult(but then so can I). The main trigger was my Dad being diagnosed with Alzheimers and then being made homeless, he lives 300 miles away and I drove up in a state of huge anxiety (sorted it out though) my first noticeable attack came directly after this.

So just putting it out there really.... There’s a lot going on, the doc was really vague and I’m the kind of person who once I know the issue I can face it.

All the best,
Steve
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
638
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Hi Steve,

Many of us here can relate to some or even all of your symptoms. Since your doctor suggested you may have fibro, and it sounds a lot like it to me, I would probably go on the assumption that is what you are experiencing, although of course You should have any medical tests you have not already had, to rule out other things that might be a lot more treatable than fibro is.

Personally, I have seen some things I would rather I had not seen, and also experienced some. Trauma is one of the large contributors to the development of fibromyalgia, although not every one who has it has experienced trauma.

You will find suggestions and support here. We are here to help.
 

longtimer

Active member
Joined
Feb 5, 2020
Messages
31
Reason
DX FIBRO
Diagnosis
02/2020
Country
CA
State
AB
Stress is a major trigger for my flare ups - It's not just the pain that flares, but I feel physically ill and emotionally down at the same time. And once you are stressed, it is easy for that stress to build and build until it dominates every thought and all your actions. It is very hard to pull yourself out of that - but recognizing what is happening is a first step to dealing with it.

My muscles can get very tight and painful from stress so I take time every night to do a series of stretches, and roll on a foam roller. I also try hard to meditate - not like in the movies, but to just breathe deeply and clear my mind of the stressors that keep replaying. I do this before bed - and I also read a pleasant book - nothing too dramatic, before turning off the light. This allows me to relax enough to sleep. I have also started to do a yoga routine that is really a series of stretches and breathing exercises and that has helped during the day. There are many techniques and ways to individually manage your own symptoms - it takes effort and time to find what works for you.
 

RLG

Active member
Joined
Aug 2, 2020
Messages
32
Reason
DX FIBRO
Diagnosis
07/2020
Country
US
State
MI
Hi All,

I’m not 100% sure what’s going on and am hoping for a little light

I have recurring symptoms which have happened about 5 times in the past 2 1/2 years, they usually seem to occur with the advent of stress. Initially it was major stress and recently it seems to have been triggered by less stressful (but still stressful if you get my drift) situations.

2 years ago I was checked by the doc, had a few tests and MS was ruled out and Fibromyalgia suggested, all he offered was a self initiated Cognitive Therapy Group that I didn’t pursue as was too anxious to follow it through.
I don’t have arthritis either.

My symptoms start mild and build up, they last around approx 5 weeks to 10 weeks with the intensity increasing. I’m currently at 4 weeks and am getting the following:

Tight muscles with muscle burn in biceps, forearms thighs and calfs
Joint aches, especially hands/fingers
Neck ache at sides and top of spine
Constant Crepitus in neck, knees and elbows
Pain in neck (bearable) also stiff
Shoulder pain, both sides
Tight facial muscles
Blurry vision that comes and goes
Depersonalisation - totally spaced out at times, this comes and goes, head feels fuzzy almost electric
Fatigued but not hugely
Wake in the mornings unrefreshed
Sleep pattern is interrupted, regularly wake at 2.30/3am

I do have a genetic disorder HLA-B27 that can affect tendons but unsure as to what degree.

So there’s a bit to go on 😁, I’m not feeling anxious I don’t think.

Yoga is helping and so is wine/beer(I know.....).

I’m just sick of it to the point of borderline depression(I was diagnosed with depression about 18 years ago but that was following the death of my lovely Gran). It does rear it’s head every now and then though. I’m also a firefighter and have seen a few things I’d rather not, a couple of them come back every now and then, plus recently divorced and only get to see my daughter once every 2 weeks plus my ex-wife can be very difficult(but then so can I). The main trigger was my Dad being diagnosed with Alzheimers and then being made homeless, he lives 300 miles away and I drove up in a state of huge anxiety (sorted it out though) my first noticeable attack came directly after this.

So just putting it out there really.... There’s a lot going on, the doc was really vague and I’m the kind of person who once I know the issue I can face it.

All the best,
Steve
Hi Steve. Wow, so many of the things you have described are very familiar to me. I admit, I had to google Crepitus, but yes, I have that, too. I think other people can hear my knees--I can. It sounds like a butcher breaking up raw chicken parts.
Trauma? Check Sleep disturbances? check Banding tightness? check visual disturbances? check Pretty much all of it.
You mention HLA-B27. I have recently become very interested in this because I am sandwiched between 2 parents with psoriatic arthritis (one with reynaud's as well) and a child with Mast Cell Activation Disorder and 2 other autoimmune diseases. I think there's a connection.
Like you, once I know what I am dealing with I can handle it, it's the not knowing that makes me feel afraid and helpless. I literally did visualizations to be given a bottom line diagnosis, because THEN I could face it head on, even if there wasn't a cure or single treatment. I want to science the **** out of it (right after I'm done napping.)
I also indulge alcohol a little more frequently than I probably should. Sometimes it helps. I find that going to bed with it in my system however keeps me awake and restless.
as per your visual issues, look into ocular migraine and orthostatic hypotension.
for the depersonalization, 2 ideas: PTSD from severe physical trauma caused me to experience something akin to that, and I also discovered that consumption of sugar alcohols like erythritol and stevia made my head buzz and heart jitter and made feel like I was having an out of body/mind experience. ?? Just "food" for thought.
Please keep us informed of any new info and symptoms...we (I) are still learning.
 

RLG

Active member
Joined
Aug 2, 2020
Messages
32
Reason
DX FIBRO
Diagnosis
07/2020
Country
US
State
MI
Just a quick update--1st, how are you doing?? Have your symptoms changed, worsened, lessened?

2cd, you motivated me to think about hla b27. I was going to ask the rheumatologist to request the test for me. I was in the process of linking my health records from various past treatments to make it easier for me and the new doctors to look at when I discovered that I was already tested for it in 2008--which was the last time I flared so badly. Results=negative. That actually changes how I look at my current flare/pain.

Because since then, as I've said in this forum, my kid was DX with Mast Cell Disorder. That is a whole new aspect of genetic mystery. Looking back to 2008 I recall being a whole lot younger, and being in unbearable pain that time for 2 months--bad enough to seek treatment. Neg. for MS, neg. for RA. Wiped out and miserable. FF to now>>>>new flare, 5months steady and still winding down for this one (with a few in between.) Exhaustion, dizziness, pain, and so on. This time is the worst ever.
I know fibromyalgia is not considered "progressive". I rather disagree. I also know it is not fully (barely??) understood.
Don't know that this helps, but my own symptoms wax and wane and build up steam to a boiling point, too. Be patient. Keep a record, because your own health history may surprise even you one day.
 
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