Is doctors statement true? Fibro is an intolerance to pain?

[oogleboogle]

Hi all,

So I finally went to the doctors recently with my concerns about my body/joint pains and fatigue (along side a long list of other symptoms) and my thoughts that it could be arthritis, fibro or ME/CFS.

He has advised me that many medical experts believe fibro is caused by an intolerance to pain. Is this true and is there a scientific basis for this? I was perfectly nice but secretly felt a little insulted by it as, in normal circumstances where pain is involved like accidental straightener/oven burns and waxing myself etc., I seem pretty brave, but then again I'm always in pain and suffer with ridiculously painful periods so maybe I do struggle to cope with pain?

I know lots have you have probably been researching and following fibro for years so just wonder if this is the leading medical view right now?

He has been pretty thorough and ordered bloods and suggested perhaps a referral or treatment with gabapentin but also said I may not want to be put in the 'box' of being diagnosed with this? hmmm.

Thanks in advance for any advice. x

[Mandypandy1969]

Some doctors are just bloody ignorant. nothing to do with it. xx

[Lou1054]

We have a low pain threshold ( we feel pain intensely from mere touch) we have a very high pain tolerance. Fibromyalgia is, according to my Neurologist, a malfunction of the central nervous system, a very real very debilitating illness xx

[desquinn Partner Volunteer FMAUK Trustee in reply to Lou1054]

I would have to disagree with you Lou1054 in that we perhaps do not have a low pain threshold but that our brains react differently to stimuli due to Central Sensitisation Syndrome. Our brain may react and lower the pain threshold or amplify the stimuli but it is not all the time. It's a semantic difference

Also not sure if we have a high pain tolerance per se because of the fibromyalgia btu I am sure that we become used to our normal pain levels over time but new pain stimuli that s not part of our normal regime is still just as fresh and painful.

However, this doctor describing it as an intolerance of pain is as if we don't like it but everyone else does When you look at fMRI's then you can see the brain lighting up like a xmas tree in comparison to normal healthy controls when the same pain stimuli is applied.

[Lou1054 in reply to desquinn]

Just trying to be supportive, I can only speak of my experience and of what the Neurologist has explained to me. x

[Mdaisy in reply to Lou1054]

Of course Lou1054 you can only relay information. I know that desquinn as FMAUK Trustee has a responsibility to explain and keep members informed with the research to date. I know we all feel there is much research that still needs to be done and the fMRI's showing the pain perception studies would be a good place to continue as the scans do show changes compared to healthy controls. We may then know for sure about the possible CNS Pain Sensalisation theories and how this possibly relates to many chronic pain conditions.

[Hidden in reply to desquinn]

Hi from my "digging" as Quack calls it! it has a lot to do with the LH and FSH amongst other hormones with way muscle etc are as find they become tight quicker than normal muscles which are normally more supple.

Reason i say this is if just pain why does it cause eyes/hearing/teeth and more problems?

The blood circulates not just oxygen/red cells but also enzymes/hormones and other things so if more of something or less muscles become problamatic with there functioning!

So pain is just a symptom of the issue rather than the cause and another reason say i think this way is way we can't regulate our temps along with more prone to clots/tia's.

One thing that comes back to this is why have issues with gums if muscles loose there suppleness it will cause gum recession as gums part of a muscle system.

But it isn't a clear cut/black and white issue as many have various issues as we are all different!

There is lot's of new research out there of late

[desquinn Partner Volunteer FMAUK Trustee in reply to Hidden]

when they have done muscle biopsies on people with fibro their has been nothing significant discovered. When type 2 atrophy was found it was put down to inactivity rather than being indicative.

[Mdaisy in reply to desquinn]

I wonder about MPS Des, any knowledge whether these knots on biopsies show anything of note?

[desquinn Partner Volunteer FMAUK Trustee in reply to Mdaisy]

I don't but as people can feel the knots I would expect there to be something

[Hidden in reply to desquinn]

Hi i very much doub't it would show in muscles esp once dead!

But think of it how your muscles/body feels gives you some idea of what i mean?

As we are a collective of parts not one entity!

[desquinn Partner Volunteer FMAUK Trustee in reply to Hidden]

well the muscle biopsies were initially done on people that had passed. I think there was an expectation of there being some physical evidence but there was not.

I like the analogy of phantom limbs and how pain can be present in a limb that is not there. Once we take this on board the brain causing the widespread pain should be easy to take on board.

[Hidden in reply to desquinn]

One of the things i found other day which sent link to Mdaisy was one in USA where they found or talk about with it effecting lung function with body not clearing co2.

which actually makes as found my breathing is often poor and worse when done more things/tired physically as found if i do very little or sleep alot as ive done ofl ate as been so hot so had to sleep when could my breathing has been good not wheezy etc and not aching like normally do even feet not like been run over! so most things been far better where as normally find it harder in hot weather.

As one of the things noticed but no one took up onit when talked about as guess not a cold or flu?

Was when had endoscopy each time noticed my SATs would keep dropping into the 70's so they gave me oxygen where as mostly top end 90's

So if oxygen low and co2 not cleaned out that will make muscles bad!

[desquinn Partner Volunteer FMAUK Trustee in reply to Hidden]

Hi Hidden unfortunately we could not find a respected journal link for the study you found. At present the theory is that fibro is a central nervous system condition but people with fibro are prone to other conditions that can be related or are unrelated so it makes the understanding of the underlying cause so much more difficult.

[oogleboogle in reply to Hidden]

I see that desquinn has advised that they cannot find a respected journal link for that study. I would mention though this sounds really familiar to me too. I find my breathing is very heavy when I'm fatigued too.

[desquinn Partner Volunteer FMAUK Trustee]

No i don't believe so but I would ask the doctor for the references so you can read more and share with others. Interested to hear of any followup info that you receive.

[041051]

Hi all, don't know if this helps but the doctor at the pain clinic last week told me that fibromyalgia exacerbates other pains we may have.

[khaleeseebrown1]

Recently diagnosed was told the same thing as desquinn stated by ruematoligist just two months ago . I was also embarrassed by having an illness which gp,s know little about and dismiss it .

[Mdaisy in reply to khaleeseebrown1]

Oh it is hard but we totally understand and if you can try to see if you can make appointments with a receptive open-minded GP in future. It shouldn't happen but it seems the older DRs seem to have judgements of illnesses with little research that sometimes seems to be passed on to the juniors. Many have experienced the stigma and judgement but remember it's not your fault there is not any research and that the government should provide funding to help the Drs be more informed as well as NICE guidelines too. You've come to the right place for online support

[lyndsaylulu]

Hi sweetie, your doctor is an uneducated wally! The way it was described to me was that the pain centre in the brain was over stimulated and on constantly, misfiring messages. This explains how the lightest of touches can feel like stab wounds. As for it affecting other things like smells, hearing, fatigue, and even ibs, it is the complete over stimulation of the brain which in some cases is almost constantly switched on. He did however say that as people like us are constantly making new neurological connections in our brains there is little chance of developing dementia! Not sure that it is much of a consolation to be honest! See if you can find a fibro friendly doctor at your surgery, I think I have seen a list published somewhere. X

[KateAL]

I’ve read that some doctors think fibromyalgia doesn’t exist and it’s all in our heads. 😡 My Doctor, who normally is amazing wouldn’t diagnose fibromyalgia he wanted to diagnose polymyalgia it wasn’t till the cause of steroids failed and he sent me to a Rheumatologist specialist where I was diagnosed would he accept it. Sending gentle hugs 🤗

[Mdaisy in reply to KateAL]

Yep the 'all in the head' thing does happen and most commonly although not always the older medics although the judgements are passed down to junior members of the team or newly trained etc. Patients need to be proactive and search out the correct DR who is receptive - shouldn't have to at all however it happens all the time!

FMAUK can send a medical pack out to medical professionals if you complete the online form, link here if anyone needs it:

fmauk.org/information-packs...

Hope this helps

Emma

[desquinn Partner Volunteer FMAUK Trustee in reply to Mdaisy]

As I have said in the past I like when being confronted with the "all in your head" approach as I will counter with "I agree as there have been clinical studies with fMRI's that show the enhanced pain felt by people with fibro in brain scans."

[Mdaisy in reply to desquinn]

I think this reply wins hands down Des !

[Pat-fibro-survivor in reply to desquinn]

Hi all. I haven't posted for a long time. But felt I had to reply to "it's all in your head" attitudes by these so called professionals!

I had been with the same medical practice for over 30 years UNTIL my husband took me to a scheduled appointment to sign my medical prescription exemption renewal. The doctor we saw was extremely rude and dismissively said "what's wrong with you. I can't see anything!!" I was so shocked and bloody angry I replied you obviously haven't read my medical notes. I have fibromyalgia amongst other things. Do you have any knowledge of the condition? To which he scoffed, no not really then continued his interrogation with "Do you get DLA?" When I said yes. He said "hum, o yes well I'm sure you'll be reassessed soon" I was so cross I requested a pack of the Fibromyalgia information leaflets be sent personally to him at the surgery. I went 1 final time to ask this qwack if he had recieved the information I had requested from FMAUK. I said well you can now read all about it and I promptly got up told him I had no confidence in him and left. I now have a fantastic surgery - every one there is much more sympathetic and understanding!!!!

[Mdaisy]

Just so you know and everyone else that may read this thread, FMAUK can send a medical pack out to medical professionals if you complete the online form, link here if anyone needs it:

fmauk.org/information-packs...

Hope this helps

Emma

[Hidden]

I was told exactly the same thing by my Rheum a couple of weeks ago. I didn't argue because frankly what's the point.

The treatment options are so limited if you don't take their medications, the only hope seems to be self help.

[oogleboogle]

Thank you so much to everyone who has responded with a wealth of information. I have read every single comment with interest. Maybe he was just 'dumbing down' the explanation about the central nervous system, or maybe he just doesn't believe in it. I don't know. He said he could refer me if I want but that it basically won't help anything. Think I'll ask for that referral... Sending healing thoughts to all of you xx

[ruthiepooh]

My understanding is that we have more of some chemicals and hormones and less than others. The brain and nervous system are definitely involved which reseachers are just understanding. There is a fuel for our muscles called ATP they found that in people suffering fibromyalgia have parts of their muscle with no ATP going through their muscle. This may account for muscle pain and knots. I have also been to Fibromyalgia pain clinic course at Derriford Hospital in Plymouth, they told us to steer clear of opoids because they interfer with the function of the Adrenal glands that play a part in the immune system. Apparently the adrenal glands produce gill cells. This affects fibromyalgia in some way this is 5 yr old info. What do know is the pain dial is turned up to high because we produce to much substance P. We therfore have a high pain threshold. I also learnt that the hippocampus in the center of the brain is involved thus we can have problems in controlling our temperature. I have found distraction and heat helpful to cope with pain along with parcetamol, amitriptyline 50mg, pregablin 50mg one twice a day. I alsi take complex B vitamins and Turmeric taablets from Holland and Barratt which has helped me also. As regards your painful periods do you have fibroids? I have and I do take co-codamol for my periods as I climb the walls otherwise. I hope I have helped you and hope all goes well for you. Ruth

[oogleboogle in reply to ruthiepooh]

Thank you for all the information Ruth, it is a lot to take in! I'm hoping to see a pain clinic at some point. I'd just like some support I guess. Interesting about the vitamin B and the turmeric. I don't have fibroids but my mum and sister both have endometriosis which the doctors suspect. They don't want to investigate until after I've had children though so no idea. I really suffer with a terrible 'drunk' reaction to co-codamol so I steer clear of it now.

Hope you are feeling as well as can be xx

[ruthiepooh in reply to oogleboogle]

Thank you, hope you get the help and support you need. x

[Selfhelp2]

I think your doctor’s suggestion is bonkers. My mother gave birth to six kids and decades later suffered FM pain for a few years before it subsided.