Hello all

[JayCS]

I was meaning more like MissNeverWell described. I have old injuries, notably in both shoulders and my right wrist. Also I have osteoarthritis in both hips.and knees. Whilst xrays show this to be mild degeneration, my pain from this seems far too high In the last year or so than should be expected.from the x rays. So I think I understand how it is more that someone from fibromyalgia can suffer more from the sensitivity to pain. Add in the constant stiffness and that's what I find so hard.

One of the main hypotheses at the moment is that all these pain types are making our central and perhaps our peripheral nervous system oversensitive (central sensitization syndrome as a cause/explanation).
This doesn't apply to me in my opinion, because I have no hyperalgesia (pain oversensitivity) and only occasionally allodynia (feeling pain from something like touch).

Instead I just say we have all our degenerations, we have old injuries, that can come up again, then we additionally get new ones. And in my opinion there is some kind of 'injury' going on in fibromyalgia, e.g. in the muscle fibre cells. All this together means we have a very high level of possible pain. And when several more things at the same time come on, this I think will come out as one big bulk. Similar to the histamine bucket if our immune system overreacts: a sort of "pain bucket", that's OK for a while, until it's overloaded.

 

[BlueBells]

Exactly @SBee !!

Some of my early posts show my journey here, too. I even had doubts about being eligible, because I don't suffer the pain and insomnia which seem to be two of the main symptoms.

I mean, I get spots of pain now and then, that's how it was diagnosed by the doctor, but I would not say I am in pain, get a sort of "ache that's not an ache/pain that's not a pain", a rather confusing feeling, however, that has diminished with management.

 

[SBee]

Thanks @JayCS

I like the new thought ( new to me ) of the muscle fibre pain of fibromyalgia being seen as an injury in itself. I hadn't through of it in those terms. And in some ways, even when realising this is and addition to painful ' injuries ' the acknowledgement brings mqe a better understanding.
I know due to existing health conditions, and pesky life in general, stress plays a major factor in a physical\mental health. ( I hope the word mental does not offend anyone here,it is a word I use about myself comfortably ). Again, for me knowing one over balance of the physical symptoms of mental symptoms can affect the other for me.
I like the image of the pain bucket being overfilled.

I am learning constantly an hour my ever changing health. As newly diagnosed I know need to know what to do with the diagnosis! Finding best ways to help myself without being overwhelmed. I had to do this with a horrendous perimenopause, ( am pretty stable right now) so I now for me personally knowledge and support ( you are all helping here) is a huge factor.

Hope the weekend is kind to you all

 

[JayCS]

I like the new thought ( new to me ) of the muscle fibre pain of fibromyalgia being seen as an injury in itself.
I like the image of the pain bucket being overfilled.

Yeah, actually kinda new thoughts, for me too, based on recent bits of non-fibro research, and they fit well to my experience.
The typical explanations researchers attempt (sensitisation, autoimmune & SFN) hardly resonate with my experiences.
The less common ones of AV-shunts, mitochondria/ATP/CoQ10, low serotonin maybe a little more.

 

[Auriel]

Hello SBee welcome to our forum
We'll support you as best we can (I think it's such a good thing they've diagnosed you quite quickly) I understand what you mean about the crossover (I have autoimmune thyroid and some osteo as well as this ) and yes stressful situations can definatly worsen fibro symptoms (for me certainly) do you have pain or fatigue or both? (if it's ok to ask)

 

[SBee]

@Auriel

Hi! Nice to get another welcome,thank you. I have browsed and see you are also a very active forum member

Please ask me anything! I am pretty open when it helps to share. To be honest I have had extreme fatigue, joint pain and 24 hour a day stiffness for well over a year. I mistakenly assumed it was due to perimenopause. Once I got the hrt right, it became clear the fatigue and pain was just getting worse. Had bloods etc to eliminate some suspects. I was sent to an ME clinic who diagnosed fibromyalgia in December.

I have had underactive thyroid for 30 years or so, also Raynauds, IBS, anaemia, hiatus hernia and the osteo. I sound like a disaster area when I write it down but I try to work by getting one thing sorted at a time of its an option, other wise hormonal anxiety gets the better of me.

Hand pain and 24 hour body stiffness are my worse.

I hear about relapses? I am worried I am not in a relapse but how I feel now is actually as good as it gets and it could get worse?

 

[Auriel]

as far as I'm aware I don't think fibro gets worse (but flaire ups can make it feel worse, so any stressfull people you can do without, have good amount of space from) sometimes i feel my thyroxine levels are too low (they always show as normal but it's what I feel? I understand they won't raise them in case of hyperthyroid causing + a goitre) yes I'm quite active on here (but sometimes I go quiet from fibro/depression or other things) but other than that I like it here (and the people) I find it a nice to be!
️️

 

[sunkacola]

I hear about relapses? I am worried I am not in a relapse but how I feel now is actually as good as it gets and it could get worse?

Not sure what you mean by relapses.
fibromyalgia is not progressive. But, as we age of course certain functions of the body can be affected by age and in general people feel less energy than they did in their youth, and sometimes this will feel as if the fibro is getting worse. The only thing we can do is take the best care of ourselves that we can, both now and as we get older.

 

[BlueBells]

@SBee @Auriel @sunkacola

For me, I am thinking it "feels" worse, but my take on it is, after years, decades, of "pushing through" and the typical "put up and shut up", I think I am just a bit worn out, emotionally and physically, and I just crave rest.

I, personally, am thinking it's not 'worse', I'm just too tired to fight it and as I "give in," (which is actually a better self-caring management), I am more aware of the intricacies of the gremlins, and I'm also learning what is, isn't or may or may not be, fibro !

For some years, I've been experiencing drops in energy, but have not been convinced all fibro (although much is). I've often thought, "this is blood pressure drop" but it's always perfect when tested.

So happened, it dropped while waiting at the doctors, three days ago, and it was 80/60 ! 600ml of water and ten minutes later, 122/76. Doctor is pretty happy for me to self-manage, just keep the water up, as dehydration leads to low blood pressure.

This feeling is a tad different from the other energy drops, so be aware, keep an eye on your health.

 

[30 plus years]

I think our pain levels are extremely exaggerated. Agree with Miss Never Well.

 

[30 plus years]

I think we definitely have exaggerated pain.
Agree with MissNeverWell

Sorry for the duplicate message!

 

[Auriel]

dehydration leads to low blood pressure.

I did not know this (it's good to learn for the future, plus I like to learn new thing's + I just have)

 

[SBee]

@sunkacola
Thank you I think when I have read about relapses maybe it's people who are using medications to help control symptoms, and when the meds are no longer enough, maybe the pain seems stronger?
I appreciate that fibromyalgia is not a progressive condition. That helps me see clearer. I think I am still confusing arthritic pain as well. I ( like many) seem to have a few things all going on at once so I am still learning what some pains are caused by.

at the moment I am only using paracetamol and one low dose cocodamol to get the stiffness eased a little in the mornings. I want to try more lifestyle changes first if possible.

@BlueBells
I have had few years of bad health so I get that it just gets pretty exhausting trying to juggle everything to help keep ourselves at our optimum. Especially as health changes up and down so much . But I am glad you remind me not everything is fibro related. Something g I should have learned when I could 'blame ' everything on hormones.

I am awaiting ultrasounds results in my hands and wrists. So it is important to get things checked for cause. Sometimes I thinks it makes helpful for me to work on relieving symptoms myself and allowing professionals to look at potential causes.

i have referred myself for physiotherapy. Strangely when I was having some for.osteoarthritis, he stopped it due to new symptoms I was having. And he said sounds like it may be fibromyalgia to me...

 

[Auriel]

If the repeated post does annoy you @30 plus years you can delete it by tapping on the 3 dots next to report (under quote) I made sooo many mistakes when I joined (and spell changer made completely different sentences for me!)