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The UKFibromyalgia Forums • View topic - GP visit - waste of time :o(



GP visit - waste of time :o(

Anything to do with the NHS or Private Healthcare.

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GP visit - waste of time :o(

Postby Picklepudding » Mon Jun 17, 2013 9:44 am

So, following my rheumy visit, I was referred back to the GP to get medication sorted. What a complete and utter waste of time. Firstly, I needed to get Vitamin D supplements. According to the advice that he has got, my levels were in the lowest bracket so needed the highest supplementation. The recommendation was 20,000u per day for 7 days followed by 800u per day after that. He decided that the highest amount he could prescribe was 800u and that you can buy supplements for 400u from Holland & Barrett so he wouldn’t prescribe any. So, at 400u I would have to take 50 tablets per day! He said that was ridiculous, so has told me to take 10 tablets per day totalling 4000u and told me to stand in the sun with no sun block – I told him I can’t as I burn very easily and, anyhow, what sun???!!!!

So, I then asked him what I could take for the fibro. ‘Nothing’ was his answer. I can’t take amytriptyline as it interacts with the citalopram that I’m taking for IBS and I don’t want to stop taking that. I asked if there were any painkillers I can take…’No’. He said that if I really want to take painkillers, ibuprofen is as good as anything…I can’t take Ibuprofen as I have Crohn’s. My ‘only option’ is exercise. He said that he’d one read some research on fibro that said that exercising a muscle to exhaustion (i.e. repeating an exercise on a particular muscle until it is physically not capable of doing any more) has been proven to help people get over fibro quicker. So, I have to start gentle exercise and build it up until I’m exercising very hard. There were no suggestions to help me get through the Florida holiday.

I’m feeling very deflated and worried for the future if I literally have been told I have no options. I feel a little bit alone with it all really.
Crohn's, IBS, plantar fasciitis, psoriasis, Vitamin D deficiency, minimal osteoarthritis, possible Hughes Antiphospholipid Syndrome and fibromyalgia...I'm a walking medical encyclopaedia!
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Re: GP visit - waste of time :o(

Postby bevmraw » Mon Jun 17, 2013 10:03 am

Hi,

I also had very low vit D levels and was started on 40,000 iu for 3 weeks followed by 1,000 for well thats just it I have no idea have been on it since February. When I asked my G.p she was supposed to contact the hospital to get my levels and yes i still don't know. I also asked if I could have a bone density scan as I had to go onto HRT when I was 34 due to major surgery (ovarian cancer scare) aand got told i couldn't have one until I had actually broken some bones. So as if having fibro isn't enough I am now worried I my have osteoporosis (please excuse spelling). What is it with G.Ps do they think we like being in this position, do they not realise how difficult it can be even attending appointments.

I hope you get it sorted soon, Bev x
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Re: GP visit - waste of time :o(

Postby Picklepudding » Mon Jun 17, 2013 10:09 am

You see, it just doesn't make sense! The advice that the GP was referring to was from St Thomas' hospital and said that if your levels were between 0-35 (mine were 28) then the dose was 20,000iu for 7 days...yet you were prescribed 40,000iu for 3 weeks and surely you can't get a level lower than 0?!?!?! So they don't even all refer to the same advice!

Can I just ask, when you were on 40,000iu, was this a prescribed dose or 'off the shelf'? x
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Re: GP visit - waste of time :o(

Postby 2measures » Mon Jun 17, 2013 10:25 am

Hi, I read your notice, and personally I think you have a doctor that is not interested in your case, which is unfortunate. If you are unable to take ibuprofen then try paracetamol just as good, the progression of that is diclafenic and tramadol. I went away this weekend and there was a herbalist who was very understanding in our case and like all doctors answers "you need to loose weight" a majority of the messages I read find this very hard like myself. She suggested "Nettle Tea" which I am going to try now, and Beta Carotene which you can get online or from Barret and Holland, it is used for helping eyesight and one of the side effects is to loose weight. "Nought but trying" I think.
I do think though if it is at all possible see another doctor either in the same practice or change to another, as that is half the battle one that understands. Thinking of you 2measures xx :(
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Re: GP visit - waste of time :o(

Postby bevmraw » Mon Jun 17, 2013 10:39 am

Hi,
I was prescribed the 40.000 iu by my rheumy at the hospital and i got them from the hospital, he then wrote to my G.P asking her to prescribe the 1,000 iu. I am concerned that the dose I am on is wrong and as she doesn't have a record of my vit D levels and hasn't done another blood test to check them i might be on the wrond dose. When i suggested that she might like to do a blood test herslf, she looked at me as if I had gone mad. The thing is I was only diagnosed with Fibro last October after months of pain and loads of hospital tests, I don't know what to expect, what I should and shouldn't be doing and i need guidence and advice from my G.P but like so many other people I am just made to feel I am a time waster.
Bev x
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Re: GP visit - waste of time :o(

Postby Picklepudding » Mon Jun 17, 2013 10:44 am

Well I've been told that I've got to have a blood test to check my Vitamin D and calcium levels in 8 weeks.
Crohn's, IBS, plantar fasciitis, psoriasis, Vitamin D deficiency, minimal osteoarthritis, possible Hughes Antiphospholipid Syndrome and fibromyalgia...I'm a walking medical encyclopaedia!
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Re: GP visit - waste of time :o(

Postby bevmraw » Mon Jun 17, 2013 10:51 am

I was put on this in February and my last blood test was the end of Jan, I have an appointment to see my G.P on Thusday and thought I would broach the subject once again!!!!!.

Hope you get it sorted soon.

Bev x
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Re: GP visit - waste of time :o(

Postby alikat10 » Mon Jun 17, 2013 11:28 am

Admittedly I stopped reading the three quarters of the way through because I was screaming in frustration for you!
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Re: GP visit - waste of time :o(

Postby *Lisa* » Mon Jun 17, 2013 11:41 am

If this was me i would be calling up the rhumatologists sectretary and explain everything and ask if you can speak/see the consultant.

Failing that i would seek another GP at the surgery or speak with the practice manager about your concerns.

This is because there is medications you can take for fibro along with treatments/physio referal /pain clinic etc...

Also you need someone who will take control of your vitamin deficancy instead of telling you to lay out in the sun with no sun block!! EG.. no sun! and also its dangerous to not have sun cream on (skin cancer) and severe burning as you state you have sensitive skin!
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: GP visit - waste of time :o(

Postby Picklepudding » Mon Jun 17, 2013 11:48 am

The problem that I have is that I've been discharged from the rheumy and would have to be referred back. I am a member of a health society who will see you if the NHS waiting list is too long, but once you've been discharged they will not have anything to do with your case unless your GP refers you back to them.
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Re: GP visit - waste of time :o(

Postby Picklepudding » Mon Jun 17, 2013 11:50 am

The problem that I have is that I've been discharged from the rheumy and would have to be referred back. I am a member of a health society who will see you if the NHS waiting list is too long, but once you've been discharged they will not have anything to do with your case unless your GP refers you back to them.

I would also add that when I asked the rheumy about pain relief, he was also of the opinion that there is nothing that would help. He said to take paracetamol/ibuprofen if I felt like it was helping but that the only medication that could be offered was amytripyline which, as I said above, I can't take!

I've come to the conclusion that I have a 'special' type of fibro for which no pain relief will help. You must all have a different type of fibro than me lol!!!!!!!!!!!!!!!!!!!

I think that the GP is under the impression that my symptoms are being caused by the Vit D deficiency (which of course may be possible) as he said he wants to see whether my symptoms get better once the Vit D levels are normal...although whether they'll ever be normal if I don't get the right level of supplements is anyone's guess! :too-upset: :pull-hair:
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Re: GP visit - waste of time :o(

Postby FluppyPuffy » Mon Jun 17, 2013 12:21 pm

New GP sounds like it might be your next move. If there aren't any others at your current surgery, try contacting other surgeries in your area and see if they have any patients with FM or similar conditions and/or a GP that specialises in or has an interest such conditions. If they do, see what you need to do about transferring.

Having a decent GP can make all the difference when it comes to being treated for FM and its often~associated problems. Even one who doesn't know an awful lot about the condition, but is prepared to listen and work with you can help,


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Re: GP visit - waste of time :o(

Postby bevmraw » Mon Jun 17, 2013 12:28 pm

I have to confess that even with my high vit D dose of 40,000 iu etc my pain levels haven't changed.
Bev x :(
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Re: GP visit - waste of time :o(

Postby Picklepudding » Mon Jun 17, 2013 12:52 pm

Aaaaarrrrrrrggggggghhhhhhh I've just been to Holland & Barrett and despite the GP telling me that I should buy 400iu tablets, H&B actually sell tablets that are 1000iu. So, I now don't know whether I should take 4 of them to equate to the amount that the doctor said I should take, or whether I should take 10-20 of them to equate to the amount that St Thomas' says I should be taking.

I'm getting really cross today!!!!
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Re: GP visit - waste of time :o(

Postby FluppyPuffy » Mon Jun 17, 2013 12:56 pm

Altho increasing vit D levels can help with how people can feel, unfortunately it doesn't make a difference to everyone :( :( :( :(

Pickle, there are various types of meds that can be used in helping manage FM, this linky tells you about some of them http://www.nhs.uk/Conditions/Fibromyalg ... tment.aspx You could try a different approach with your GP to see if you can get a better response from them. Sometimes going in with a more direct approach, saying that you have been looking into things, have found out about these sorts of meds/treatments, and you're wanting to know which of them might be suitable for you to try can get things going in the right direction. You could always take someone along who knows you and how bad things can be for you, for moral support or to even speak with you about things to help get things across.

Altho you have been discharged from the rheumy, you should be able to ring them and clarify what they have said/recommended about things. If you explain about the farce you are having with your GP about the vit D levels, they may even be able to speak to/contact them about the levels you should be taking.


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