Apologies for missing so many of your wonderful posts which I am catching up on now but I have been somewhat self absorbed in my own little world that is a pain management course.
As some of you know, I was questioning the theory behind it and what were your thoughts on it.
I must say I met some wonderful people and made a couple of new friends and learnt a few coping strategies for when things get really bad. I really enjoyed a lot of the neuro science lectures too and the mindfulness topics and skills. However, I do have issues with a couple of the things taught.
I do understand how pain works, my neurologist explained it to me ages ago so what the course teaches is correct and truthful, but I really had to raise concerns over one thing in particular.
They go to great lengths to get you to believe that your pain is not doing you any harm or causing you any damage and it is just your over sensitive nervous system responding to some trivial matter. That's fine in a lot of cases but I took offence when they constantly generalised the statement. This should be toned down and emphasised that it's "usually" but not in all cases.
I believe us autoimmunees pain is different. We all have some degree of chronic pain going on for which this is true, but we also have recognised pain from things with a specific cause that cannot be ignored or brushed of, such as chest pain from lung issues or costochondritis, headaches from vasculitis, eye pain from dryness, stomach cramps from motility or IBS, joints pain from arthritis etc etc. All these things cause pain and although we are usually aware of them, there are always times when they worsen and need extra treatment or they escalate or we just know that something is not right. In this case, pain is an indicator of something being very wrong for us.
I know these things can happen to anyone, but for others, it would usually be acute rather than chronic so of course that is different. For us, we may already have these things but sudden worsening of the chronic pain should not be ignored and believed that it is not harming or damaging us in any way. This could be really dangerous to someone who was not as ready to challenge this as I was.
I have asked that future programmes be mindful to people with diseases/illnesses where their pain can actually be harming them and they need to act on it, not just ignore it.
Perhaps I was just being a bit too nit pickey? I don't know, but I really wasn't happy with the fact that it could potentially cause someone some serious harm.
Other than that though, apart from the tiredness and exhaustion of the long and intense course, I did quite enjoy it and learnt something too.
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Georgie-girl
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I TOTALLY agree....have been studying Pain Science & putting what I've learned into effect with + without the help of medics for many years, and discussing this with fellow sufferers too...becoming increasingly convinced of what you're saying...but I couldn't have put this into words as well as you have 😉
Funnily enough, this morning on the HU Pain Concern forum, I was trying to explain that sjogrens DOES cause actual pain: synchronicity
Glad you posted: had been wondering how things were going!
I was beginning to think it was only me that felt that way.
I do understand of course that a lot of chronic pain is just an over sensitized nervous system, but they really can't go on lumping everyone together with a one size fits all approach when we know for a fact that some times, pain CAN be causing us more damage.
Interestingly, our Lupus UK talk this month is about pain and one of the psychologists from our programme is the guest speaker. Should be fun. X
My instinct is to be v cautious about any established theories about almost anything...my feeling is that there is LOTS that's great about contemporary explanations of PAIN, but, likewise, there is quite a lot of theorising & generalisation which will gradually be debunked/clarified "in the fullness of time" as research increases understanding ad infinitum ...meanwhile, I'm all for a healthy amount of scepticism....
As Mark Twain said:
All generalisations are false, including this one
(I can almost hear the groans...I do trot this quotation out a lot here 😆😆😆😆)
Georgie I could hug you (gently and politely of course!) for posting this update. So much of what you say is chiming for me on a very personal level.
I've been going through a terrible flare of small fibre neuropathy that is affecting all of my extremities, my face plus my GI dysmotility issues seem to be in on the act big time. I have posted about this and other types of pain so won't bore you here.
But for Sjögren's there is this notion ammongst UK doctors and the BSSA that the damage done to the sufferer is usually self limiting. But as they won't test using the technology available this is purely supposition - as is the SFN in my case because my skin biopsies were negative a few years ago.
On the Sjögren's World Forum and Patient forums I've seen many for whom this type of neuropathy hasn't been self limiting at all. One grandmother with Sjögren's SFN had lost so much sensation in her arms that she couldn't lift or feel her newborn grandchild at all.
Under the John Hopkins rheum, Dr Julius Birnbaum, Sjögren's patients with confirmed SFN are offered IViG and this has helped many a lot. So several of them are outraged at this UK proposal that this type of horrendous pain is usually self limiting in terms of damage.
I've also had to come off a Sjögren's FB page because I just couldn't bear it when I tried to describe my pain or fatigue and got told "it's your Fibro hon - it just goes hand in hand with autoimmunity".
But that's another story... I'm really so glad you got something positive from this experience and made a few friends. I'm equally pleased that you made this very important point to those who need to know. Well done!! X
Thank you Twitchy and I'm so sorry you've been suffering a lot lately and sorry I haven't responded to your posts. I have barely had time to breathe with this course being 9 to 5 Monday to Friday and the evenings spent sleeping from fatigue and generally catching up on things I haven't had time to do.
I am totally with you and what you say and how dare the fb crowd assume it's all fibro related. I have some horrendous pain and although I tested positive for small fibre temp changes I was, like you, negative for the biopsy bit. Therefore it is assumed my pain is fibro or in my head or whatever else.
My dysmotility also is causing me grief at the moment as it is worse than it has ever been. Perhaps that too is fibro related. Damn cheek.
Oh you are so reassuring about the FB people Georgie. The trouble was I was in so much pain myself that I allowed my exasperation to show and then got called patronising by one member and told off by the admin for explaining exactly what you've been speaking about here i.e that the label might be leaving some with destructive pain to rot unsupported until too late. I wasn't trying to say that anyone's pain isnt real at all - just casting doubt on the usefulness of this label. I wanted to remind them that Sjögren's is a serious disease and I therefore wonder why so many are prepared to accept that their pain is clinically benign? By accepting this label I feel they might be doing a disservice to themselves, but also making it less likely that proper evidence based research is undertaken into the less understood types of pain which attend our autoimmune diseases.
In fact this point troubles me endlessly. A first cousin of mine was dismissed with Fibro and OA but it turned out to be PsA but without the psoriasis and has severely reduced her mobility permanently now. She is on the highest dose of Methotrexate with Sulfasalazine and Prednisolone, but is told by her rheum that a lot of the damage is beyond repair now, mostly to her peripheral nervous system as her joints are being replaced one at a time. She's still only in her 40s.
I feel we have to be so vigilant in these financially straightened times about very overworked doctors - but it's so hard. I've become too paranoid to speak about my own pain much now.
Anyway I'm newly on Viagra for my Raynauds - which does not feel as hilarious as it sounds unfortunately! 😫
I sometimes feel that my problem is that I do take my symptoms seriously and fear progression and erosion - and somehow so do my doctors. This sometimes makes me too willing to try further powerful medications, which often turn out to cause me more harm than good.
There is no real answer to this dilemma but I will just say that I think each of us with any form of recognised autoimmunity should guard against labels which will inevitably put our pain up on a high shelf in diagnostic terms. X
All we can do TT is keep on at our specialists and hope we can make them understand. Together we can change these labels but we have to be less accepting of things and more prepared to make our feelings and symptoms known to those who matter.
Yes I totally agree that it's a question of us standing together on this matter. Shame we have to as you say but I think this solidarity is becoming increasingly important. X
For what it's worth - I agree with you. Sometimes pain is a warning that we need to take notice of and it shouldn't be dismissed like that.
This is actually one of my gripes about "Pain management" and I was so relieved to discover that the pain unit here where I live starts with looking for a physical/medical cause. The other stuff comes when they have ruled that out...
Thanks Pro and how lovely to have a pain team like that. Surely it is only right and common sense to check for something mechanical/medical before they tell you to ignore it as it's not harming you in any way. You're very lucky. If only they were all like that.
Many thanks for posting your pain course thoughts and congratulations for completing it. No mean feat when we're I'll. Did you get a certificate?. I did from mine!. As you know I've done a similar course and learnt exactly as you about the mechanics of pain and differences between acute and chronic!. Where I think yours has gone wrong is down playing the pain and not saying that if you get a sudden worsening or change in symptoms to seek their help or GP help!. My course was at great pains to say this so good for you asking that they change this aspect on future courses!. Good luck with pain talk at lupus uk meeting. Will be an interesting comparison. Look forward to hearing all about it. Rest up now and give yourself a big pat on the back. X
I did ask about a certificate actually, but sadly no. I was told we will get a copy of the lengthy letter the GP will get. Shame really.
It seems everyone else's courses speak sense and advise correctly except my one. Even after correcting them they were still adamant that all pain that is chronic is irrelevant and not doing anything or causing any harm. I certainly hope they do change it in future.
Really can't wait to hear the pain talk on Saturday. As you say, a very interesting comparison.
Some years back prior to my diagnosis, one of the consultants I saw suggested that I may have some sort of chronic pain thing and when I asked what he meant he explained that people's nervous systems sometimes over work etc etc etc and I felt a bit crushed because I thought essentially he was calling me a hyperchondriac!
Since then though I have been diagnosed. I also suffer with OA in many joints. Had I listened to him how would my OA pain have been viewed? Just ignore it?
Pain surely is a warning that something is wrong! True, we shouldn't be fixated on it, keeping things in perspective is important, but I agree with you that it is harmful to teach that something as FACT, when it's not!
Your case soootired is exactly the point I was making. It would have been so easy for you to just live with the pain and suffer thinking it was just your nervous system over reacting when all the time your joints were being damaged.
I have heard people say that these statements and teachings are true when you have been investigated and nothing has been found. I disagree. In the case of us autoimunees, things can take years to manifest but that doesn't mean there is nothing wrong with us just because nothing has been found. Things are still at work starting to damage our bodies.
Are we then investigated and re tested over and over for years on a whim just in case or are we then classified as just having a sensitive nervous system and lead to believe we are not being hurt in any way?
It is hard to call and a very fine line but I think for now, all we have is common sense and getting to know your own body. We are our best advocates.
Nicely done, and congrats! But as you say, that's the thing I always found really frustrating with the pain clinic and I did one ages ago: which really frustrated me at the time is they actually said fibro pain isn't 'real' pain, that it's just the body triggering pain receptors needlessly. I always countered that with 'but it is therefore still being triggered, and therefore, like it or not, isn't imaginary'. The main focus they pushed was to ignore it, as it wasn't 'real' - yeah I went round for round with that one. So I'm glad that the message isn't just a more nicely worded 'all in your head', and also glad you gave them feedback even so.
I hope what you've learned can all be applied for you to have a more pain-less life! I wish you ease.
Thank you silver and I'm so sorry to hear what horrible things you had to put up with during your pain clinic. Maybe our bodies do trigger pain receptors needlessly in some cases, but it still equates to pain and as you say, therefore it is real. I wonder what some of these people who lecture and "educate" others, actually know themselves.
I'm glad you fought your corner and hope it has helped you deal with your pain a little easier.
I've just remembered that, about 4 months after starting Methotrexate for supposed RA, I found that I was getting really low for 24 hours following each weekly dose. My rheum had not seen me at clinic for review as promised, so I saw my GP, who said I was just suffering from some depression about coming to terms with having RA.
I went away and thought hard about this and wrote to him explaining something of my history and telling him I don't suffer from depression when things get tough - it's just not my way. He saw me again, thanked me for my letter and said he had emailed me rheum, who had emailed straight back saying I needed more MTX and to introduce Hydroxy too. He said depression is a symptom of active inflammation for some people and I must be one such - as wrists still flaring and lots of burning pain everywhere.
The truth is that the only reason I was never told my pain was due to overactive pain receptors/ Fibro was because he could see my ESR was still up in the 60s. This is still very often the case for me - only a high dose of steroids has ever brought it down to 17-ish.
So what happpens for all those who's inflammation doesn't show up in their bloods? They get told their pain is benign when, quite often, it just isn't. I keep thinking of a comment on Silvergilt's recent post about mental health by HappyTulip who's great rheumy said "I choose to believe my patients". She needs cloning I think!! X
"So what happpens for all those who's inflammation doesn't show up in their bloods?"
We are ignored and it is insinuated it is all in our mind, not serious, our age (pre, peri or post menopausal), depression or fibromyalgia... Been there, done that.
Grrr, why do doctors still say things like that Twitchy? Lots of illnesses CAUSE depression I believe. Certainly CTD. I usually get depressed or down when a flare is starting. Not because I'm depressed I'm getting a flare up (I didn't realise this at first) but because depression is a symptom. I have seen so many therapists, psychologists etc as certain doctors have thought I was depressed about having an illness. They have all discharged me immediately stating I was not depressed or over anxious, just having a normal reaction to a chronic multi symptom illness.
Thank heaven for some sensible knowledgeable people.
As for those who's inflammation doesn't show in their blood, I'm with you and Pro.
We are ignored, disbelieved or have our pain out down to something benign. X
Yes and the fact that many of us have had other very painful conditions such as eczema with Pompholyx (me) or endometriosis or psoriasis etc and may have given birth to large babies with no pain relief, or endured many other kinds of severe physical pain with stoicism - counts for nothing suddenly - just because it doesn't show up in the blood?!
Until quite recently Ulcerative Colitis was considered benign/ IBS - until it proved not to be. The tender points of PsA are often the same as those used to diagnose Fibro and bloods are very often entirely seronegative.
Another close friend was days away from death when, finally they realised she didn't have M.E after all - she had Addison's Disease.
Hmmmm. The jury is still out for me on this whole concept of benign pain.X
Depressive mood is listed as a symptom of many autoimmune disorders. And inflammation and depressive mood have been shown to be linked.
Sometimes I sit here wondering why I know something from the medical literature and doctors apparently don't...
And some of the trigger points of fibro are the same positions as those of myofascial pain syndrome. But they are concentrations of cytokines which can be biopsied and identified. The lecture from an orthopod who'd done the research was such a wonderful confirmation of what I'd been saying for years by then - I didn't know whether to laugh or cry! And now I live somewhere where they recognise it and talk about it - pain clinic specialists, rheumies and physios. All of them!!!!!
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