start slow…
i disagree with this. i mean everyone is different.
but for me the attitude i adopted was very much…
i have fibro… so the pain is not real.
“the pain is not real” can be a contravercial thing to say to a bunch of other fibro people. i have learned that the hard way. Trust Me
but for me its how i handled it.
i’d start walking… my ankle would protest, and then i would tell myself to remember the truth. “Know the truth”
“There is nothing wrong at the site of this pain… i know its been checked/scanned/examined… therefore i can be confident that the pain i feel is my sick brain being a d!ck”
“The brain is giving my phantom pain. its not real.”
“stop it brain… we are going for a walk… your an ankle… be a goddammed ankle!!!”
and then id walk despite the pain… and it would get worse at first, and then id forget about it and it would go away, and i would realise later that i was walking and i could do it and there was no pain"
I had a profound moment of revelation complete with tears of joy!
I am actually OK.
this was the basic foundation of how i got much better.
this is how you repair your sensory pathways.
my brain is like a 4 year old child. throwing a tanty because doesnt want to go for a walk. but make them do it and theyll forget and be excited by seeing a doggy after… etc.
i really nailed this and did everything a normal person could do for a long time.
i took empowerment from it when i would run up the stairs at work carrying 2 computers… etc my wrist/ankle would protest but i knew it didnt matter.
and after time the pain lessens down to almost gone.
many fibro people disagree with this.
tell a fibro person… no you can actually just walk and they will look at you like you simply have no clue.
it involves the person being very hard on themselves and very strong.
and ive certainly been trolled heavily for my wacked out methods online.
anyway… i still will share it because it might help someone!
how i now apply this knowing that i have underlying Psa (AND THERE IS A REASON FOR THE PAIN AFTERALL)
i dont know i havent figured it out yet. it kinda blows.
this was just a small piece of the big fibro advise i want to give soon.
There’s a lot in those posts @nickace. I read it thinking, basically, good for you to have come through. It sounds like you’ve laid some demons to rest … some of which you know you created yourself (they’re the worst ones to deal with!). Being honest with ourselves is not easy to put it mildly.
I believe my family member has accepted that there is no purely physical pain from fibro. It is very real … it’s not imaginary, it’s not a result of being a flaky, over-sensitive individual, it’s not ‘malingering’ … but with fibro the mechanism that causes the pain comes from the mind or the psyche, whatever you want to call it. Mind and body are the same damn thing as far as I can tell.
We think we have control over our thoughts and feelings, we have some. I gather that one strand of the strategy for tackling fibro is exerting what control we do have in specific ways. Oh I wish my family member was more voluble and inclined to tell me more! Such a private young woman so I do not get to hear exactly how she has tackled fibro so successfully - though the battle continues for sure. I knew she was intellectually gifted and now it seems she is wise as well, able to reflect and work on herself very patiently and determinedly.
I am pretty sure that there is no reason for some of the pain I get from PsA. Like all of us I bring my mind (what’s left of it) and my life to the party. Some of my experiences and patterns of thinking seem to minimise physical pain. I generally have a ‘high pain threshold’, so there have been times when I’ve known that pain was being caused physically, but I did not feel it. That, I guess, is the opposite experience from fibro, but stems from the same source and is not necessarily a healthy response to pain, though I’m quite grateful for it!
However there are also times when I suspect that pain is amplified and generalised by the person I am. If I won the lottery tomorrow I would have no pain on that day, I can guarantee that. If something really terrible happened, the same would apply. But slight depression, monotony, low-self esteem etc. etc. all amplify pain for me I reckon. That is probably quite a common experience but reflecting on it makes the much more severe and troublesome pain of fibromyalgia easier for me to grasp.
@Sybil
Let me clarify my statement on “the pain isn’t real”
I understand perfectly and better than anyone that the pain IS real. Very much real.
Any time we perceive pain it is the brain doing it.
Therefore when the brain malfunctions in this way and gives you pain, is as real to your perception as any other pain you might experience.
if someone stabbed you in the hand a signal would travel from the hand to your brain, would get interpreted and the brain world make you perceive pain in the hand.
Fibro is when a signal gets received or misinterpreted in error, or amplified.
Therefore the pain is real.
However… I say it’s not real because there is no reason for it and shouldn’t be pain. It’s happening only in the brain with no issue at the site of the pain.
Why I refer to it as phantom pain and why I tell myself it’s not real.
I get it @nickace, was saying the same thing … very difficult concept to articulate. And in fact it is possible to get stabbed in the hand or whatever and not feel pain … I was beaten up once (nice guy eh?) and felt nothing, not at the time, not later. which illustrates how complex these mechanisms can be and helps make fibro more understandable I reckon. However the pain memory might be stored somewhere and come out later … I’ve speculated enough. Must be an absolutely fascinating topic to study properly.
I find this truly interesting @nickace. Lots of similar work was done and is done with CFS/ME too from back in the 1980’s/1990’s onwards which helped and still helps such a huge amount too for those so suffering it.
One thing I’ll say - when PsA first hit me and inflamed me, (it did it very suddenly), I found the pain levels utterly, shockingly, awful. Untenable mostly. However some many months down the road, it was continuing to inflame me (and I wasn’t then long enough on meds so they could do anything positive or indeed on the right ones which ended up working for me), but although the pain levels were still dreadful, my poor brain sort of gave up making me metaphorically hit the ceiling so often. I was so grateful for that. Later, I was even more grateful the meds worked.
I think we truly don’t know how our brains truly work on such stuff but certainly I can see through what you’re saying and my previous work with CFS/ME, that it is possibly to re-train brains and rehabilitate more generally too. But it takes time, practice and most certainly the right guidance, that’s for sure.
I feel incredibly lucky my brain and subconscious and even sympathetic nervous system doesn’t do a tizzy with pain, loads of others aren’t so lucky. At all.
I have PsA and FMS and right this moment I’m feeling the awful effects of both along with plantar psoriasis which, today, has left me barely able to stand/walk. And I’ve been sick with a respiratory virus for four weeks so I haven’t got enough energy to properly reply but I’d say to anyone who has FMS then, if you haven’t already, check out this book. It’s the best information and management resource I’ve come across, written by a doctor who herself has FMS:
Fibromyalgia & Chronic Myofascial Pain - A Survival Manual - Devin Starlanyl & Mary Ellen Copeland
Interesting discussion. I like to tailor my thoughts and body when possible. Here is a problem though–reality wins. Having a good framework, goals, and healthy thinking helps but it is not the end all say all. Does it make sense to try hard to be better? I say yes but to ignore the other parts pulls thinking out of balance in my opinion. It does not make sense to hold back the tide. The body is what it is and the mind or thinking follows the current. It is the totality of experience. There are ups and downs and I am just here for the ride. heh.
Oh, the pain is real. It doesn’t make any difference if it is REAL pain or psychosomatic, the pain is real. The big question is if the pain is telling you there is an injury and stop whatever it is you are doing.
When I worked with fibro clients with hypnosis I helped them learn to control the pain levels, but most of all, worked with the emotions and stress that came with the pain.
Often my clients didn’t realize the thought processes that were happening when the pain would come on. Working with them under hypnosis helped them discover how they paired pain with certain feelings. By doing that we could break the pair bond and help reduce the pain created from the emotions.
When working with people with terrible chronic pain they often felt like they would never stop hurting. When I would take the into deep hypnosis I could get them to a place they felt no pain and keep them there. Often, just letting the brain understand that the pain could be “turned off” was enough of a convincer that I could help the client dial down the pain because they knew it could be done.
The brain is an amazing thing. Sometimes it just need some help to learn something new.
Watto: No, they won’t-a. What? You think you’re some kind of Jedi, waving your hand around like that? I’m a Toydarian, mind tricks don’t work on me. Only money. No money, no parts, no deal!
Seriously though, emotions and pain being related or tied together is interesting. It certainly makes sense that the two would be linked. It is probably tied to having more memories of painful stimulus. If the overall body is stressed and on overload due to disease or stimulus I could see how that would be. If someone could put me under I would sign up. I do not think I can be. I am a skeptical guy—my study in different types of knowing through philosophy ruined me…
We typically think of emotions as being special feelings, somehow superior to physical pleasure or pain, but are they really so different? I just about accept that they emanate from the same processes and are interconnected.
When I’m emotionally stable and all is well in my little world, my ‘disease’ truly does tend to behave itself well. When I’m struggling emotionally with anything, be it work issues, relationship issues, grief issues or whatever, my ‘disease’ tends to misbehave too.
It’s one of the reasons I’m such an advocate of ‘talking therapy’. I continue it not because I need any ‘issues’ sorting out that are acute, but simply because somehow it ensures I’m more emotional resilient day by day and month by month. And I’ve learnt to treasure that ‘resilience’ more and more dealing with this disease and the ridiculous nonsense it can throw at you out of the blue.
Hi, PsA causes me most of the symptoms Fybromyalgia causes a close friend of mine. The exaustion, fatiuge, brain fog tendon and muscle pain are all symptoms of Chronic PsA. I wouldn’t read to much into the Fibromyalgia as the treatments you get for PsA would look after any Fibro symtems anyway.
I was Dx’d with Fibro twice by two Rheumy’s, even before PsA. Fibro is mainly symptom based syndrome, sleep problems, pain etc. as you know. Turns out with the new biologic, I found out that most of the “fibro symptoms” have been PsA related from Enthesitis. That and the Small Fiber Neuropathy Pain. Not saying the FMS is not real, just that a lot of times it is a lazy throw away Dx that doctors give you when they don’t want to do the leg work necessary to find the cause, either that or it is like a place card to be saved for later. It is convenient that their is not much in the way of tests or treatment, a few off label dangerous pharmaceuticals, to get your mind off The pain, or just destroy your mind so you stop bothering the doctor…
Bitter? Me, no, just realistic… Spending years dealing with clueless doctors… when I first went to them 33 years ago for my neuropathy pain, they thought I was making it up, to get out of work. They had not yet discovered the disease severity or how to test for it. Fibro patients have gone through the same rough treatment…
Rant over…
I have to agree with you here, Stoney. The underlying inflammatory condition that causes chronic pain can change the way our brain perceives pain. Fibro is the body’s wonky response to that chronic pain. This is anecdotal in all of the patients I’ve interviewed and in research I’ve gone through. Honestly, I am so glad that fibro diagnosis has gotten better and more accepted. It makes getting some sort of treatment, or at the very least, acknowledgement that you aren’t nuts so much easier.
That’s not necessarily true. I had been well treated for PsA for several years but continued to have severe deep pain in my femurs and similar, less severe pain in the rest of my long bones. Repeated testing and evaluation by concerned, competent rheum found no cause for this. As a former ER RN who was educated during the high points of the opioid epidemic by jaded ER staff, I believed that fibro was not a real condition and that they simply weren’t looking hard enough. No WAY I could have THAT! I’m not drug seeking! It took nearly 2 years of debilitating pain and near suicidality for my PCP to beg me to try Lyrica. I gave in only because I couldn’t live this way any more. 14 days later, it was better and on days it wasn’t rainy? It was gone. Lyrica literally saved my life. I’ve been stable on it ever since, and able to tolerate the slight ache when it’s overcast. Let’s not discount this as a real condition.
As many as 30% of PsA patients have co-occuring Fibro. It’s very much real. The problem is that the 14 tenderpoints used to DX fibro overlap the 20 some tenderpoints in PsA. I think that there are very few practitioners left who think its imaginary. Effective treatments are being approved regularly the body of research is growing and the autoimmune link pretty much accepted though there is work left to be done. I personally think as much if the perception problem is with older patients as it is with older docs…
