So... This is my first blog. Not sure which way to turn anymore

I was diagnosed with fibromyalgia last year after being sent to a rheumatologist. Felt like I was kind of given a label and discharged. I belong to a doctor's surgery so more often than not I see different doctors. I noticed last time I went I flashed up as a " frequent user" which made me feel like a bit of a fraud. They sent me back to rheumatology in December for pain advice and was diagnosed for a second time and referred back to the doctors to be sent to a pain clinic. The doctors phoned to say they cannot access a pain clinic but will refer me to a chronic fatigue clinic around 25 miles away!

I have so many questions to ask but I'm sure that putting them all in this blog would make me sound like a hypochondriac!

I'm a single parent with a 13 year old son ( with hearing loss in both ears and terrible self esteem issues) . I work full time as an assistant teacher ( I teach full classes every afternoon and assist in the mornings). Money worries up to my eyeballs. Had an asthma episode yesterday ( just one of my new found illnesses!) and am hoping the only way is up!

Ok first question... I take citalopram 40mg,levothyroxine, omaprozole, asthma inhalers, prescription strength co codamol ( for 2 and a half years) and dosulepin. The dosulepin are meant to relax me and stop my jaw from clenching. It no longer works. Anyone else had this experience? Is there anything else I can ask for? I'm on the highest strength now ( 100mg)

Phew! I've been brave enough to write a blog!

9 Replies

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  • Firstly welcome and congratulations on posting. Most of us on here are frequent users a our GPs most of us have to be because of the pain the ever changing symptoms etc. If you feel you GP and the surgery are not sympathetic there are some options .. Firstly perhaps find out if there is a fibro friendly GP at your surgery.. I FINALLY found a surgery that has 3 specialists in it and the other three are all very very helpful.. If that isn't an option write the GP you see the most a letter describing how you feel not just about fibro but how you feel about having to come in so often... I did this with my GP after a really bad flare up last year when I was in and out the surgery all the time , it really helped and he knows as much as i like him I would love not to see him from one year to the next... Over time some people, stop responding to certain meds I have tried 4 different anti depressants and finally found dosulepin that does suit me .. But the three others didnt... So that's a good case to go back to your GP and ask for a med reveiw... I used to take co dydramol. That suddenly stopped working and gave me a headache.. So back for new meds. If ever you feel bad about going into the surgery write a list.. Many is the time I have sat blubbering while my GP reads what I wanted to say.... I am at the moment going through med swap overs so am in a bit more pain than usual...

    Please never apologise for posting however long or short we are all in this together and if we can will offer advice and sometimes you just need to offload and we have all been there...

    VG x

    Ps you can always click on messages and Personal message me if you don't feel like posting on the forum

  • Welcome MissDizz,

    As Very Grumpy says if you feel you are not getting the right treatment you may need to go to another Doctor, ask for a second opinion maybe and/ or find another GP in your area then change surgeries to his/her practice.

    In regards to your medication we have information on the FibroAction website in the All about Fibro~ How is Fibro treated section, link below:

    fibroaction.org/Pages/About...

    These factsheets are downloadable and you can print them if you wish too.

    I personally take Pregabalin for nerve pain and some people are prescribed Gabapentin.

    I have found these anti-epileptic medications have been a great help myself and I take Pregabalin twice a day.Please consider talking to another GP about your pain experience and whether there are other medications you can try.

    I wonder why they cannot access a pain clinic? Is there not one in the local area?

    Can I also post a link to a page with helpful hints about talking to Doctors which may of help to you too.

    fibroaction.org/Articles/Be...

    Welcome once again and enjoy the forum !

    Best Wishes

    Emma

  • Hello MissDizz,

    My colleagues Emma and VG have said it all, so may I join them in welcoming you to our site.

    Please don't ever worry about coming here and having a good moan - we all do it, and somehow it helps to offload to others who understand.

    I hope that you manage to sort out your problems with your GP, and that you will find a more accessible pain clinic.

    Finally, remember that GPs depend on 'frequent users' for their income, so never feel bad about visiting your surgery!

    Love Moffy x

  • hi missdizz,

    I'm at my gp's so often I'm surprised I don't go on the staff christmas do! although I did go on two theatre trips with 4 of the receptionists!

    like vg suggests, I write bullet points of what I want to say or ask and hand it over when I go n.

    the links above are useful, when you have time give them a read.

    take care,

    sandra.

  • Thank you for all your advice. I have started making a list and I'm going to try to book a double appointment. It feels such a relief to speak to people that understand as even close friends change the subject if I want to talk about fibro.

    :)

  • welcome to the forum.i am positive my dr ignores me and thinks everything is in my head.its taken 8 months to get a referral to ENT for acute sinusitis.he wrote "nosebleeds "in my notes disregarding the fact that I had a swollen nose,2 black eyes and pain in my forehead. and have dismissed me when I have told them I have a cough since sept but cos my chest seemed clear did no more.i also told them any weight gain was due to the solid mass which is my tummy as i ahve l lost weight elsewhere.this fell on deaf ears also. one dr said its all in my imagination and another told me my painful protruding ribs were just inflammation without any xrays being taken .I now find out that gallstones can cause this.i could go on forever .

  • There is a doctor interested in rheumatology in my practice but I refuse to see him now as he just tells me I'm overweight and gets rid of me. The last time I saw him I came out sobbing. I have found myself lately putting everything down to fibro pain. I ended up seeing an emergency doc this weekend as I had left my asthma so long and had an attack.

    I'm not even sure that I take co codamol as a pain killer or a relaxant!

    I've had so many blood tests done, had a bladder scan and a colonoscopy. I lose traces of blood in my urine but they say its " normal for me".

    Arrgghhhh!! Fibro lol!!

  • Welcome to the forum x we're all very different people yet all the same with fibro.. I agree you really have to shop around for an interested GP. I personally have given up and gone down the alternative and dietary route.

    Well done for posting. Ask away. We've all been where you are.

    I tried various drugs but found they either didn't work for long or they gave too many side effects.

    I'm now working on the leaky gut theories.

  • Hi, There's nothing worse than the feeling that nobody listens or understands. Because I don't visit or meet up with friends unless I'm well, they don't see me during flare ups. If only they could walk in our shoes eh?! As for meds, I'm on similar to you but have Gabapentin and Tramadol instead of co-codamol. I'm not on Omeprazole either as I have no digestive problems. I think 2.5 years on Co-codamol is a long time, they stopped being effective for me after about 9 months. As others have said, write it all down and go back to your GP. Like you, my surgery has a lot of GPs but I only stick to one, if she's not available I wait as otherwise it's a waste of time. Dig your heels in until you get answers and feel happy with the outcome.

    Good Luck,

    Jenni. X.

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