GP Referral/Rheumatologist appointment at last.

Posted , 8 users are following.

I mentioned in my last post that I would keep you all informed about my GP appt. - which was this morning - specifically to ask (for the 4th time) for a rheumy referral.   I was in a mood because I got very little sleep last night and just wasn't prepared to be fobbed off.   I didn't hesitate in letting her know how awful I feel and how upsetting not knowing has been. It must have shown in my face because she agreed to refer me.  I was given a referral booking form, went home, called the number with my hospital choices. I got my first choice - which happend to be the first available appointment 5th September. What a relief - I thought  i'd have to wait 3 - 4 months..........

Having said all that, Im  beginning to REALLY WORRY that the Rheumatologist won't find anything - oh dear - think I need to get some sleep now.

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17 Replies

  • Posted

    yipppeee youve got an appointment yey so pleased for you hun at along last. dont worry stop stressing it will make you feel ill. The rheumatologist is the person that diagnoses fibro he will be able to tell you whether you have it or not. He may well want to do more tests to rule out rheumatoid arthritus. This what mine did with me. I had to have abone scan blood test. he did a pressure point test on different parts of my body. Their are 18 pressure points he put pressure on those areas using his fingers to apply pressure.When the test results came back he called me back in to see him he said you have fibromyalgia. first thought in my head was relieved to get a diagnoses after a 10 year wait 2nd thought was what the hell is that?. He discharged me from him sent me packing to my gp for pain relief. you will be fine try not to worry. be kind to yourself and treat yourself to something nice. take care gentle hugs x
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    • Posted

      Thanks for the reply, Fingers crossed I get an understanding Rheumatologist. My daughter has tried a couple of the pressure points and they are particularly bad during what i think is a flare. The pain relief im taking at the moment is Co-codomol and paracetamol cant anything in the ibuprofen family unfortunately. I now realise that I haven't waited as long as some people on this forum but because of you guys, and your experiences, I have gained alot of knowledge and also the courage to keep the pressure on my gp.

      Thanks again. x

       

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    • Posted

      Hope all goes well for you when you see the rheumatologist, he will either rule fibro in or fibro out Their are 18 pressure points I have the full 18. Im unable to take meds due to the severe reactions Ive had. my gp and I have discovered Im allergic to opoids. so I just use hot water bottles and wheat bags. Your gp can send you to a pain clinic and also for cbt. where I live we get free acupuncture for 12 weeks and also hydrotherapy at our local hospital for so many weeks.also see if where you live has alocal support group. take care
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  • Posted

    Hi Ela, so very pleased you got your referral although it's so frustrating you had to fight for so long. Even if your tests come back negative it may not be such a bad thing, because ruling out some things actually rule in others, such as fibro. That means your treatment can be tailored to suit you better. 

    Good luck and gentle hugs xx

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  • Posted

    Result.....Well Done.

    Don't worry, you will get confirmation whether you have fibro or not. Good Luck and stay calm and positive. wink x

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    • Posted

      Hi Bee, feeling much better, just had a very long afternoon sleep, the appointment this morning was really draining. I've always had an issue with not being listened to, so this mornings outcome is a small victory for me. Thanks for the good wishes, ill keep you all informed. xx
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  • Posted

    well done for being demanding cause in this day and age you have to be cause most of us with fibro at some point have been fobbed off by doctors and deprived of a rheumatology apointment so well done you for that and let me know how you get on and hope you get anwers and the help you need good luck and take care x
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    • Posted

      Hi derek, It has been difficult for me and when you don't have the energy for most things, having to battle your gp is an added burden.

      I am very grateful to everyone on this forum, because i gained the mental and emotional strength to keep going back for a referral. I was peed off this morning, and I think she recognised that. I mentioned that I was aware of the budgets etc,  but I just wanted answers.  I think that scared her a little -  so she did what she should have done months ago.

      Thanks for support. x

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    • Posted

      thats ok be proud of yourself for that cause i have had the same problem with doctors for 26 years and then got my diagnosis so i know whats its like to keep getting fobbed off and for what its worth even though i dont know you i know how hard it is to do what you did so be proud of yourself cause i know i am proud of you and hope you finaly get the answers you deserve and good luck take care x
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  • Posted

    Don't worry ela..they are the specialists that diagnose...well done you, for being assertive, taking your health in your own hands is very empowering..remember to stay as stressless as possible as it really plays havoc on the Fibro..also worry changes absolutely nothing at all..except be bad for YOU, ...well done to you again...give yourself a huge gentle hug...also rather a short wait. to see the Rhumo...be blessed..have a lovely day..:-) xxx
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  • Posted

    Hello Ela. Was really glad to read your post. I had been wondering how your appointment with GP had gone. I'm so pleased that she has referred you to a rheumatologist.It's bad that you've had  to get to such a point before being referred. As I said in my original post,I suspect it's to do with cost. I think,like me you mentioned you have a good sense of humour. It can help with the pain,but go against us when we need "to be taken seriously". My GP has promised to take me dancing~yes I know~when I'm better. But no mention of how he's going to help me get better!!!! You haven't got long to wait~next month. Don't worry that the Rheum won't find anything wrong~aagain, I can see myself doing that. It's good news~a diagnosis at last. You may have inspired me to re~visit my GP and demand to see a Rheumatologist. Well done. 
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    • Posted

      Hiya Dotcon, Sorry i hadn't answered sooner, spent most of yesterday in pain and unable to do much.  Not sure if I'm nore relieved that my gp has listened to me or that I'm a step nearer to getting a diagnosis. I produced a list of the recent symptoms (which I think relates closely to what people call a 'flare up'). I was deretmined for her to hear me out this time.  I went into great detail about how strong and stubborn I used to be before my symptoms began and the tendency I have to 'push' myself even if a task seems difficult. I also told her that I was upset that the Neurologist made the assumption that I was tired all the time because I sat around all day doing nothing.  Just because the neurological tests he ordered came back negative.   You're right about the sense of humour thing, I have a problem with appearing weak in front of people, so I play things down.  One of my strengths though is when I think I am not being taken seriously, i am able to draw on my inner warrior - she comes out when and I have a 'don't mess with me face'
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    • Posted

      Sorry leaned too hard on pad of lap top and sent reply before I'd finished.

      It's a shame that most of the experiences on here are similar.  Im glad  hear that I have inspired you, I got my inspriation from so many others on this forum.

      Good luck with you GP re-visit. Hope you get your referral soon.

      Take care - love and hugs.

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    • Posted

      Ela808, I have read in your response to Dotcon, that the Neurologist made the assumption that your tired because you sit round doing nothing all day!!  .... Was that it, was that his report diagnostic verbally to you?   And what tests did he perform that he rules out 'Negative'??   

      I'm curious because as it's been said or proven, 'not all 18 plus trigger/pressure points are sensitive or sore every day!   And not all folk have loads of these 18 plus firing off on the day of a specialist appointment!  True Fact to...  

      Very interested to hear/read your response to my questions Ela..  

      Kind hugs

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    • Posted

      Hi deb97936, The Neurology tests were an MRI of my upper spine, because my neck is always stff, painful and i often hear the bones click or grind together. The other was an EMG to test my muscles as they are weak - he did say the test showed some mild muscle myopathy (weakness), but put that down to inactivity.

      I have noticed that all my symptoms aren't present every day. It depends on what i do. The general weakness and fatigue is always in the background, but if I overdo things i am useless for at least two days. Thats when i notice all the symptoms are present. 

      I have NEVER in my whole life been seen as lazy, i have always been told that i push myself too hard.

      I am still quite upset at his comments, he met me twice, for a total of less than 10 minutes. 

      I just want to find out what is going on with my body, and why, as a previously active and strong female - something as routine as taking a shower or mashing potatoes can leave me wiped out for ages afterward.

      I really appreciate your reply, hopefully i am a step closer to getting some answers.

      Love and blessings x

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    • Posted

      I would push for a 2nd opinion and that of a Specialist who actually does have knowledge of what Fibro is about...  

      Your MRI would have shown up some changes in your upper back which possibly age related which would be very minimal if your between 20 - 65 yrs without history of Osteo or serious Trauma issues.  

      DID he in fact do an MRI of your Cervical, NECK and the junction to your Thoracic.  C7/T1  ??   It should have been your NECK he examined not your Thoracic area.  

      I hope you have copies of your MRI/s.. If not GET THEM, and take them with you to a Muscular Skeletal Specialist (Orthopaedic is it???)  

      They look at BONES...  

      If you have Osteo in your neck it can produce symptoms of neck aches, graunching and the odd painful situation.  Feeling like bone on bone.  However you need an MRI for this on your Cervical/NECK area.   

      Just check I have the spelling correct for the Cervical/Neck as I get it confused with the the Lady's Cervix area hahahaha!!!!  And that is NOT what you want.. LOL....

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