Upset by pain clinic appt - need advice?

[elphiemcdork]

Hey so I've no idea if this is the right place to put this but I'm feeling angry and upset and I just need some advice. (I'm in the UK, by the way!)

I've been waiting for four months for my pain clinic appt to come around. I already have a diagnosis of fibromyalgia and I planned on asking for the clinic to refer me to the M.E. clinic as I wanted to see if they felt I had M.E. as well as fibro.

I had a five minute appt where the doctor just fired questions at me and didn't look up from her paper. I was told that I shouldn't call it fibromyalgia because that's "not helpful" but I should call it "widespread pain" instead. Was told to come off meds as they're useless, and I couldn't have a referral to the M.E. clinic because they don't take anyone with chronic pain. (!?)

I did get a referral to the pain management course so we'll see how that goes. But I feel patronised and angry that she belittled my condition and made me feel like I was being silly. I didn't need to wait four months for that appt, my GP could have done what she did today back in July when I first got the referral.

I'm tired and angry and so cross that I was treated that way. I basically feel like I'm not getting the treatment I need and I wondered if anyone else has had a similar experience and had any ideas where to go from here?

 

[*GG*]

Sorry to hear that, sounds super frustrating!

GG

 

[ChronicFatigueSurvivor]

I can really see why you're upset, seriously. I don't know how it works over there, but I'd be writing a complaint, or an appeal against what the doctor concluded, or I'd go to the clinic again and just wait stubbornly for hours until someone else agreed to see me.

 

[melamine]

Hey so I've no idea if this is the right place to put this but I'm feeling angry and upset and I just need some advice. (I'm in the UK, by the way!)

I've been waiting for four months for my pain clinic appt to come around. I already have a diagnosis of fibromyalgia and I planned on asking for the clinic to refer me to the M.E. clinic as I wanted to see if they felt I had M.E. as well as fibro.

I had a five minute appt where the doctor just fired questions at me and didn't look up from her paper. I was told that I shouldn't call it fibromyalgia because that's "not helpful" but I should call it "widespread pain" instead. Was told to come off meds as they're useless, and I couldn't have a referral to the M.E. clinic because they don't take anyone with chronic pain. (!?)

I did get a referral to the pain management course so we'll see how that goes. But I feel patronised and angry that she belittled my condition and made me feel like I was being silly. I didn't need to wait four months for that appt, my GP could have done what she did today back in July when I first got the referral.

I'm tired and angry and so cross that I was treated that way. I basically feel like I'm not getting the treatment I need and I wondered if anyone else has had a similar experience and had any ideas where to go from here?

elphiemcdork - Sorry you are having to go through this. First, you probably already know enough not to go back to a doctor who is disrespectful and did not take you seriously. Something you need to consider is whether the referral itself was prejudiced, as is often the case when this happens. Get copies of doctors' notes and any labs. If you see coded language or missing or wrong information, make a point of correcting it during your next appointment.

In spite of your bad experience, if pain is a primary symptom then seeing what the pain clinic has to offer may be worthwhile: natural pain techniques can be quite helpful if approached with an open mind.

Anger and stress have a tendency to exacerbate symptoms and sometimes bring on new ones, so whatever you can do to manage and reduce those by understanding why your were treated as your were, and through meditation, yoga, good sleep and/or other less formal means, will keep your head clear(er) and your body in strong(er) enough to do what you need to do to find solutions to your health problems.

 

[minkeygirl]

If you read around the forum you'll see that the UK is notorious for not taking patients seriously. I also believe, someone from the UK will have to chime in @maryb that there is little help for ME in the UK and what there is is based on GET and/or CBT.

@melamine. Please edit your post and put in some paragraphs. I and many others can't read that much text.

 

[elphiemcdork]

Thanks so much for your replies

I'm going to wait for the letter from the clinic which will have the write-up of the appt and see what that says. I'm hoping the pain management course will be helpful at least.

I'm going to practice some good self-care for the next few days - being frustrated and angry last night on top of the fact that it took energy to get to and from the hospital anyway will really take it out of a girl! In the meantime I'm going to poke my nose around the forums a bit more.

Thanks again guys

 

[Purple]

I'm going to wait for the letter from the clinic which will have the write-up of the appt and see what that says. I'm hoping the pain management course will be helpful at least.

I hope your pain management course will be helpful but please make sure you know what you would be getting into as any exercise-based programme based on the idea of the pain being caused by deconditioning and fear of movement would likely be detrimental to people with ME who can get harmed greatly by exercise, especially aerobic exercise.

The pain management course I participated in involved no pain management at all but only GET, CBT, being patronised and being humiliated in front of others as not being 'really ill' but 'just having low self confidence'. This was years ago and led to me permanently deteriorating from the severe end of moderate ME (wheelchair bound, very occasional short outings, mostly bedbound but able to sit for short periods of time and e.g. read and watch TV) to being severely ill and bedbound with some symptoms caused by this 'pain management course' never improving - such as cognitive problems that developed in earnest only after the GET.

 

[Tired of being sick]

You'll find the help you're looking for..

Once you become your own PCP..

Do your own research

Pound on every specialist's door(relentlessly) that pertains to your research

rinse and repeat..

You have to take charge of your own health..

Nobody's gonna do that for you.......

 

[Little Bluestem]

The pain management course I participated in involved no pain management at all but only GET, CBT, being patronised and being humiliated in front of others

@elphiemcdork , Unfortunately, you can get the same thing at an ME clinic.

If you posted the name of the clinic you went to, someone in the UK might be able to tell you if their pain management course is safe.

If someone here told you about a competent ME clinic or specialist, would the person who referred you to the pain clinic refer you there?

 

[elphiemcdork]

I went to the pain clinic at Southmead hospital in Bristol. I wanted a referral to their M.E. clinic based at the same place, she said no but said I could have a referral to the pain management course which apparently is the same thing (??I literally have no idea??)

However the reason I wanted a referral to the M.E. clinic *specifically* was because they can diagnose, and I wanted to either confirm it or rule it out. Except they don't take people with chronic pain. Except they actually do, I think.

The referral (to the pain clinic) was from my GP and I had to fight hard for that one. The rheumatologist recommended it as one of the possibilities back in February but my GP wouldn't do the referral until July once I'd already been through all the various medications the rheumatologist wanted me to try (that the pain clinic doctor has now told me don't work and that I should stop). And I already asked my GP for a referral to the M.E. clinic but she said she wouldn't do it while I had an active referral for the pain clinic. I'm thinking the GP won't do it at all now, especially if the pain clinic doctor says that *she* wouldn't refer me.

And this is why the whole thing makes me want to have a very long lie down.

 

[Insomniac]

I wonder, is it worth going to an "ME clinic"?
What do they do at an ME clinic?
You must check that it is not CBT and exercise. If it is, then it is good that you are not being referred there.
It is extremely hard being messed around like this.

 

[elphiemcdork]

I wonder, is it worth going to an "ME clinic"?
What do they do at an ME clinic?
You must check that it is not CBT and exercise. If it is, then it is good that you are not being referred there.
It is extremely hard being messed around like this.

Yeah, it's going to be GET and CBT. I realised that there's probably no point in getting referred there anyway as I doubt they'll be much help. I actually found someone's blog who'd just done the M.E. course and had scanned and uploaded everything so I got a look at what they do.

At the moment I'm having problems with food so I'm trying to work that out. I've realised the best way to try and make things better is to work things out myself, really. As we all do I imagine.

Holiday cheer to all!!

 

[taniaaust1]

yes, most of us need to work on ourselves as there isnt a lot most doctors will do for us. Do thou keep looking for at least a doctor who will listen well to you even if they arent going to go trying experimental treatments or anything like that for ME/CFS. Try to find one willing to help with symptom treatment.

You can probably diagnose yourself if you have ME/CFS or not at this point, I assume your doctors have done tests and ruled other things out for your symptoms? If doctors cant figure it out, that throws you into the CFS wastebasket diagnoses.

Check out if you meet the canadian consensus CFS criteria or not. You may get treated less well at pain clinics if you have a CFS diagnoses.