pain clinic

hi just been to pain clinic at the Carlisle infirmary.what a total waste of time,so angry.the dr there said theres no word as fibromyalgia,and to stop all my pain killers.to go see phsio on 22nd September and then him again in December.theres nothing like putting you down when your already feeling down due to all of the pain I'm in and going round in circles trying to get answers.so blooming useless.i do not know where to turn to next for help.and beginning to wish I wasn't here anymore.ive been in tears.so blooming frustrating.some dr he was.maybe would get better result if I saw my cats vet.so sick and tired of all this

[Keeleybee]

What a d@ck! did he give you an explanation of why you should stop pain killer's?

Big hugs try not to let it get you down, go back to gp and tell them you need a smypathetic doctor and not a dinosaur who doesn't believe in fibromyalgia x

[Hidden in reply to Keeleybee]

I'm seeing my gp in morning I rang him and told him what had happened

[ClareCrip]

That is outrageous. Never mind feeling down, I would be absolutely furious. Who diagnosed you as having fibromyalgia in the first place? I'm sure they would be interested to know that another doctor has just rubbished their diagnosis! Most people seem to do best with Rheumatologists, so maybe that is the referral you need to ask for from your GP. Let your GP see how distressed you are too, and discuss with them how to manage your pain relief, even if you still need to be made to stop taking some of your medication, it needs very careful management so that you reduce dosages really slowly.

I think you have been treated absolutely disgracefully, you should be able to get better treatment than you have received. At the very least a complaint is in order. If you feel a pain clinic is the right place to be, then ask for a referral elsewhere, somewhere that offers proper pain management courses might be helpful, I don't know what alternatives you have within travelling distance, but it might be worth doing some research on the computer.

And right now, you need a big hug and all the support and good wishes that we can send you. Be nice to yourself for the rest of the day, have an indulgent treat and hopefully you will have friends and family who can be supportive too. Take good care of yourself, you deserve it!

[Hidden in reply to ClareCrip]

hi I haven't been diagnosed yet but my social worker thinks its what I have plus in april when I had terrible pain in my ribs I got the out of hours gp out and he said it was fibro,i told the dr at pain clinic this but to no avail.i rang my gp and talked to him and said what had happened at pain clinic ive to go see him first thing in morning.doesnt help my distress with stupid drs at pain clinic I was in tears when I got home

[BlueMermaid3]

Hi molind

I doubt that this will be of any consolation to you whatsoever but I had exactly the same experience at the Pain Clinic I attended.

The doctor I saw said that Fibromyalgia is a symptom not a cause and that they do not like the word Fibromyalgia!

He said I should come off all of my pain killers and mocked my pain level. I said it was a 9 out of 10 and he said that's what it would be if you were having your arm chopped off without anasetic (know I've spelt that wrong - I'm in loads of pain, sorry). What sort of analogy is that?!

I had a 4 hour trip home after seeing the doctor in the pouring rain and wanted to throw myself under a bus.

Please do pm me and we can chat. The doctor you saw sounds identical in every way to the one I saw. He offered me the loan of a tens machine, which for my pain was so beyond ridiculous I couldn't speak for fear of telling him to jump out of the window and see if that hurt.

Most people have good experiences at Pain Clinics and I felt so alone after my experience. I've been too embarrassed to share it until now, which has taken me a lot to do.

You're not alone. Just let me know if you want to chat.

Sending you an extra special hug.

Lu xx

[Hidden in reply to BlueMermaid3]

exactly sure some of the drs think weve got no brains.ive rang my gp and going to see him in the morning its a double appointment he said and its not the same dr at my practice as I saw the last time,so hopefully???.its not very nice when your in pain and were not stupid although I think that dr at pain clinic couldn't be bothered,it was 12 oclock lunchtime my appointment,probably wanting his lunch.its ridiculous here in Carlisle,makes you want to give up.and the distress on top of it doesn't help one bit.glad to know I'm not the only one going round in circles.its as if we don't exist,rediculous.i let you know tomorrow how I get on,thanks again.

[BlueMermaid3 in reply to Hidden]

Please do let me know how you get on. Don't give up. My GP offered to send me to a Pain Management Clinic in a completely different area.

That horrible doctor has put me off going anywhere again and it would be a long trek by myself.

Seeing my regular GP next week.

Good luck xx

[Hidden in reply to BlueMermaid3]

I will thanks makes you lose faith in drs if they suffered the pain would be a different story

[ALKT in reply to BlueMermaid3]

pre 1980 a lot of doctors never took patients pain experience very seriously. until a group of pioneers did some research into how disabling chronic pain can be . i know the doctors at walton pain clinic in liverpool were very understanding. but by the time i had gotten a referral there i had already learnt much of what they teach. cbt ect.

[Keeleybee]

Hi Dan, do you think opioids drugs can make it worse? I just been reading about this?

[Mdaisy in reply to Keeleybee]

Hello Keeleybee,

You are obviously keeping up to date with reading about Fibro

Here's a link to an article for others to read;

journals.lww.com/jclinrheum...

I would like to comment though that all research has variables and to what extent this occurs I would have thought without more research is unknown.

We also have the complication that reports say that people with Fibro have reduced opioid receptors therefore opioids are likely to be ineffective in relieving the pain (with the exception of Tramadol).

So, how much is Hyperalgesia is Opioid induced or purely related to the experience of Fibromyalgia (coincidence on the opioids at the time) in these trials could be debated in my humble opinion.

Interesting discussion and the recommendation for Fibro are to avoid Opioid use due to the lack of receptors & complications associated with long term use again with the exception of Tramadol.

ncbi.nlm.nih.gov/pubmed/244...

Best Wishes

Emma

[Keeleybee in reply to Mdaisy]

Thank you for the information

Always like researching x.

[landslider in reply to Mdaisy]

Hi Emma

How very interesting. I am actually prescribed a low 10mg dose of Targinact which is an opiod.

Tramadol made me so ill I had to visit out of hours for anti sickness tablets as I was vomiting every 15-20 mins for the whole day - it was the most awful experience.

30mg cocodamol had the same effect as does most anti inflammatories - I am just so sensitive to medication - prior to this FM I didn't even take paracetomol, I would just get by xx

8mg cocodamol just makes me extremely constipated and as I already have irritable bowel and rectocele, I cannot allow myself to be constipated.

The Targinact was discovered after many weeks of trial and monitoring by my GP who was very understanding and very patient.

I have also tried to stop taking the Targinact over a period of a week and use the 8mg cocodamol with Laxido but after 4 days I was in agony and nothing would relieve it. Went back on the Targinact and started to feel better again after a couple of days - amazing.

I am never pain free but life is bearable with the medication and I can mostly funtion reasonably well.

Funny how different we all are xx

[Hidden in reply to Keeleybee]

Dan ?

[Hidden]

he said that word doesn't exist.ive got appointment with my gp in the morning,i rang him and told him what the pain clinic dr said,so hes seeing me tomorrow its a double appointment.we don't need drs like that its bad enough trying to cope with the pain,plus he never mentioned rheumatologist.i took the list of questions my social worker had written down for me I showed him he read them.and the reply I got was as I said.

[rosewine]

Not laughing at younbut your last sentence is soooooo true. Had to take brother in laws cat to the vets and the service and kindness was superb the receptionist even bought her a catnip toy out of her own money!

Now back to the serious business you must be so disappointed as we build ourselves up to these things thinking that at last someone is going to help us only to have our hopes dashed yet in some parts of the country other forum members have had super treatment it is such a lottery.

I think the physio did help me a bit with some of my middle back problems and you might find the physio can refer you for things like acupuncture or hydrobso please don' despair just yet. Softvhugs.x

[casper99]

What an ignorant, pompous prat !!! There must be somewhere Doctor's like that can be reported to. xx

[magnetta]

Omg that's awful! Ignore him. What an arse!!!!!!!

I suggest going back to GP and being referred to another pain clinic. It will be a pain travelling but it's worth it. I travel over an hour to mine. Totally worth it.

x

[Hidden in reply to magnetta]

Yea agree but Dan likes him

[ALKT]

you should right a formal letter of complaint .it sounds like he is one of the many medical professionals who do not keep up to date which breaks their own rules.

[TheAuthor]

I cannot add anything to what has already been said as I would have to edit my own post! I want to genuinely and sincerely wish you all the best of luck.

All my hopes and dreams for you

Ken

[stumpedok]

Molind sorry to hear of your bad experience. ..I'm a bit concerned that it seems you are relying mainly on a social worker for your diagnosis ......can't see how someone medically unqualified can do that?!? It really sounds like you need your GP to do tests to exclude other possible causes of your pains and if those are negative to then get a referral to a Rheumatologist to confirm Fibro or not. In terms of whether Fibromyalgia is non existent just refer anybody to NHS website for details of the accepted condition! Good luck with your GP.

[Hidden]

Both myself and my friend feel we are going around in circles and banging our heads on the wall too. We went to pain clinic in Hampshire and it didnt help at all. It was a group session and we were told our pain was all in our heads. One young lady started to cry and this made me so mad I shouted at the chap who said it telling him that no one would choose to have this and we were there to get help not made to feel worse. I have not been given another appointment at the pain clinic but they have phoned on a couple of occasions to say that sessions are cancelled even though I have not been invited to the sessions? Gentle hugs Joolz.x

[Midori in reply to Hidden]

If that is how the Hampshire Pain Clinic operates, I'm glad my GP forgot to send me!

[Cazza2612]

Sorry to hear of your terrible experience at the pain clinic I had a very similar experience when I was at the pain clinic in Glasgow, I was told by the consultant that I was just stuck in a rut and should get back to work. I was so upset because I was made to feel like a fraud and was wasting his time. I went back to my GP and she said that it sounded like the consultant was having a bad day but he should have been more professional in the consultant room when treating patients. She was quite angry at his approach to me and understood why I was so upset. I have since seen a nurse at the pain clinic who has been much more helpful, I am back to see her again next week since I have been suffering terrible flare ups and depression problems.

[maawasam]

That's what he told me too, thought it was a one off. On one hand you get a rheumy diagnosing fibro, & the pain clinic next door is saying it's all in your head. What help have we got? Gentle hugs.

[Midori]

I would have first asked him what his medical speciality was, then told him to swap bodies with you for 24hours so he could experience what you were feeling.

Now, complain first to the Hospital board where he works, Then PALS, then to the Care Quality Commission about the treatment you received. That is totally unacceptable.

[Phinou]

It is the type of comments I am getting most of time. it is really unnecessary and not helping at all. Sometimes I feel that they don't know what to do with me: they usually come to a diagnose, do some tests: blood test, scans, X rays,... and see that their diagnose was wrong and refer me to someone else. Then I meet a next specialist that makes the same diagnose, do some tests: blood test, scans, X rays,...

It is a never ending story.

Fortunately from time to time you meet people that care and willing to help you. I went the a fibromyalgia this week. I have seen a doctor that discussed about my treatment (and told me that she makes some recommendations but the choice is mine on whether I want to take a medicine or even the dosage - because only me knows what works on me or not) then I met a physio who offered for me to have some physiotherapy and then a counsellor who told me how cognitive behavioral therapy could help. She recommended some books that I could read.

I was quite happy for once (usually I am disappointed), I did not have to beg to get their attention. They listen to me.

I hope that you will have the same luck in the future. If I were would I would write a complaint and ask to see someone else. If this Dr does not understand pain and don't care about patient, he should changed job.

[craftymummy]

I hope the doctor was just having a bad day! As I'm on the waiting list to go to pain clinic at CIC myself. Doesn't instill much confidence in our local hospital does it! It's bad enough when the local gps don't regonise fibro with specialist pain doctors joining the club. I would definitely tell your consultant of the lack of knowledge his supposed colleague displayed. I hope you have a good gp. As I'm struggling to find one within my practice. I live in Carlisle and know how stubborn the locals can be!

[Hidden in reply to craftymummy]

yes I saw my gp he said was fibro and is referring me to rheumatologist.he just shook his head when I told him about dr at pain clinic.and said I had not to go to pain clinic again.the blooming cic is getting beyond a joke for some things.do you know if theres a support group for fibro in Carlisle.

[craftymummy in reply to Hidden]

Yeah there's one at Cornerstone in Denton holme, first Tuesday of the month 18.30, not been myself but thinking about going. If you've been referred I hope you get Dr Russell he's great and spotted my fibro on my first visit. Lovely man too.

[Hidden in reply to craftymummy]

thanks ill let you know when my appointment for rheumatologist comes.

[Hidden]

I went to pain clinic two years ago and it got me know we're apart from a tens Machine that made my pain worse And a nurse who got me hooked on mopheme , I had cold turkey for two weeks , but you can a course of one flew over the kukoo nest there .

[Hidden]

O yes Dan you would say that are you for real , you sure you got Fibo