Stuck in the middle. Pain management and GP

I was refered to a pain specialist regarding on going pains which have got worse over time and she was extremely helpful and was convinced I had fibro. She asked me to book my self in to be checked by my GP which i did and apprently I'm totally fine but still having horrific agonising pains. Part of me wishes I'd have been told I Have fibro becuse the not knowing is as bad as it gets. Has anyone found out they have fibro after there GP says they haven't ? I had him putting pressure on certain points but for me I felt nothing!

Feeling extremely lost at the moment and in horrible pain.

38 Replies

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  • Hi there

    I really feel for you. It sounds as though you don't know whether you're coming or going.

    Have you been referred to see a Rheumatologist at all?

    If not, I'd say probably the best way forward would be to ask your GP to refer you to one?

    I would have thought they could give you a definitive diagnosis one way or the other.

    Do you know what other conditions have been ruled out?

    Are you on any meds to try to control your pain?

    I wonder whether it may be a good idea to change your GP.

    Wishing you less pain and more peace

    Lu x

    Admin

  • this is how my daughter got her diagnosis.

  • This must be so frustrating for you. Copied this from the NHS Direct site which you might find of interest:-

    Criteria for diagnosing fibromyalgia

    For fibromyalgia to be diagnosed, certain criteria usually have to be met. The most widely used criteria for diagnosis are:

    you either have severe pain in three to six different areas of your body, or you have milder pain in seven or more different areas

    your symptoms have stayed at a similar level for at least three months

    no other reason for your symptoms has been found

    The extent of the pain used to be assessed by applying gentle pressure to certain "tender points", where any pain is likely to be at its worst. However, this is less common nowadays."

    I know America has started to use a criteria which again does not stress the importance of these points but the overall pain when no other illness accounts for it.

    I think BlueMermaid3 suggestion if being referred to a rheumatologist would be an excellent idea.x

  • Thank you both for taking time to reply. It started with a gym injury and since then the pain has got increasingly worse but no real reason. As the injury and most of pain was in my chest I had several X-rays and went to a cardiac specialist to have ink put in and pictures taken and everything was fine and normal. I've had countless extensive blood tests done and again all normal.

    As the pain spread I also had pain in the stomach and this lead to a endoscopy which again was clear. As the pain worsened so didn't my anxiety which lead to a lot of hospital visits with all tests coming back clear but the pain was getting worse all the time.

    It comes and goes and can sometimes be so intense I have to stop doing what I'm doing and sit down or catch my breath. You could say it's crippling and life changing pain.

    I've been put on a ridiculous amount of medication. From gabapentin to antriptaline etc and my GP even put me on tramadol for over 8months which was horrific coming off.

    I'd say as I'm writing this with pain down my left arm, feeling extremely weak I'm almost at the end of my teather.

    Unexplained pain is horrible wish I had a answer!

  • I will speak to my GP tomorrow as that's his day in and mention what you advised its not crossed my mind or been mentioned so hopefully it's worth ago! Thank you

  • This is awful for you & nothing worse than not knowing because you imagine anything & everything. Deffo ask for referral to rhuematolgist, they normally can diagnose you if everything else has been ruled out.

    Hope you get some help & relief from your pain.

    Sending Luv

    Jan x

  • Edited By Admin As there was such a long waiting list I paid privately, about ยฃ200 to see him and he diag fibro after asking questions and examining me etc. He gave me help, told me I needed to see my dr who would give me the meds on NHS and get me an appointment to see a neurologist on NHS. He said I could contact him again if need be.

    Would it be an idea for you to see one privately and get an Edited By Admin diagnosis?

    If not see another dr at your practice and say your not happy and want to see a specialist. They can then refer you and get a proper diag either way!

    The mother page is good help and the NHS has a web page on fibro too, which might help you understand what you're entitled to get, help wise from NHS.

    Good luck and best wishes.

  • Really appricate that reply and tbh if the wait is to long I will pay, there's no price on pain :(

  • You don't need to be referred by your GP, you can research a good one and go on spire and get their e-mail address and contact them and explain and ask for an appt.

    My dr did ask her colleagues for a good one and contacted him for me etc. Maybe ask your GP about seeing a good one and if he says not on NHS ask him to recommend a local one you can see privately.

    I agree, there's no price on health. If you can do it I would say do it.

    Good luck ๐Ÿ‘๐Ÿ˜Š๐ŸŒบ

  • I will and thank you again! :)

  • Please see my reply to Fibropop before making an appointment. ๐Ÿธ

  • Actually there are some private hospitals who do need a GP referral for appointments. I know that on both occasions I have had to go privately a letter from my GP has to arrive with the hospital before an appointment is made.

    Obviously private plastic surgeons don't require a referral but it is worth checking with the hospital first.

    Most medical consultants will not see a patient without prior information from a GP.

  • You're welcome ๐ŸŒธ

  • Hi Fibropop

    Just thought you'd like to know a GP who knows about the effects and symptoms of Fibromyalgia is perfectly qualified to diagnose it ๐Ÿ˜Š

    Take care and best wishes

    Lu x

    Admin

  • Hello

    I was repeating what my doctor actually said to me, so if you are right then she is wrong. Are you a doctor? I will ask my doctor this question when I see her again next week.

  • Your GP was giving you her opinion. Not every doctor is right about absolutely everything. They are human.

    No I am not a doctor and have never professed to be one.

    The majority of doctors prefer patients to see a Rheumatologist but some are perfectly able to do the 21 point trigger/tender point test and give a diagnois.

    It depends what their specialist area was when they were training.

    Lu x

    Admin

  • BlueMermaid3 Lu, Just thought I would let you know I WAS diagnosed by my GP and given meds by my GP for quite some time awaiting appt with pain dr., so you are correct!! FYI your friend, Peck๐Ÿค

  • Hi peck

    Are you in the uk?

    Just a thought, as my dr can give me antidepressants etc, but not the other stronger meds, without me seeing the consultant. Who I saw and then wrote to her to tell her what I was to have.

    I just want, to know the truth and will find out when I see her next.

    Thanks

  • Fibropop , No I'm not as that makes no difference..a dr is a dr is a dr wherever you are.In just making a point that what was said CAN be done.Peck๐Ÿค

  • I agree with you a dr is a dr, what I'm trying to sat though is that maybe my dr was saying there are restraints to what she has the authority to prescribe. I have noticed that in the us for instance that your allied higher dosages of some meds, also I read that over there they are trying Parkinson drugs and stem cell treatments. Things even my consultant said we are not doing here, so things can be different. I don't know what your dr is allowed to prescribe for you in the USA, in some of your states some people are allowed marijuana but it's not law in others is it?

    I don't really want to argue, it's just I was trying to repeat the (what I took for honest), advice my GP gave me. If she's wrong, I really do want to know.

    Night

  • OK!!Peck.๐Ÿค

  • You are correct Peck. In the UK a GP can indeed diagnose Fibro if they know enough about it. There are short courses for GPs on diagnosing Fibro which my GP undertook in order to help manage mine.

    Plus GPs are more than able to prescribe strong drugs as I am on Fentanyl, prescribed by my GP.

    I think that Fibropop may just have a poor GP. If she hasn't been to any others then she has nothing to compare against. ๐Ÿธ

  • Sorebones , Good morning!!I knew it could be done as I was diagnosed by mine.Thsnks for confirmation as I'm sure this will help issues at hsnd!!! Peck.๐Ÿค

  • Hi guys, I have just made some amendments to this thread and am pasting this message below:

    *Access to NHS specialist treatment is via your GP and is based on need. You can ask for a referral for specialist treatment on the NHS. You will need to see your GP if you wish to be referred to a specialist in a particular field, such as a surgeon or a gynaecologist (a specialist in the female reproductive system).

    All your medical records are held by your GP, who understands your health history and treatments better than anyone. Therefore, your GP can decide whether a specialist referral is necessary and, if so, recommend appropriate hospitals or clinics.

    Under the NHS e-Referral Service, you can choose the hospital or clinic where you would like to receive treatment, as long as your GP feels that you need to visit a particular hospital or clinic to receive appropriate medical treatment.

    If you ask your GP to refer you to a specialist, they will probably suggest that you try various tests or treatment options first to see whether your condition improves. You cannot usually self-refer to an NHS specialist, except when accessing sexual health clinics or treatment in an accident and emergency (A&E) department.

    A specialist will only see you with a referral letter from your GP. The letter will give the specialist essential background information, such as your medical history, and it will also contain details for the specialist to pay particular attention to.

    If you wish to see a private specialist, you are still advised to get a referral letter from your GP. However, if you see a private specialist without a GP referral, your GP is not obliged to accept the specialist's recommendations.

    *How do I get a referral to an NHS specialist?

    nhs.uk/chq/pages/1094.aspx?...

    **Who can write a prescription?

    **Guidance from the Medicines and Healthcare products Regulatory Agency (MHRA), an executive agency of the Department of Health, states that only "appropriate practitioners" can prescribe medicine in the UK.

    Appropriate practitioners can be:

    independent prescribers

    supplementary prescribers

    A prescriber is a healthcare professional who can write a prescription. This applies to both NHS prescriptions and private prescriptions.

    **Who can write a prescription?

    nhs.uk/chq/Pages/1629.aspx?...

    ***NHS patients' rights

    citizensadvice.org.uk/healt...

    ****The NHS constitution

    ****Some of your rights as an NHS patient are set out in the NHS constitution. You can see a copy of the constitution on the GOV.UK website at gov.uk/government/publicati...

    I have posted all of this here in the interest of giving accurate information to the post creator, and definitely not to undermine or offend any of the post respondents as everyone knows this is not my way.

    I would kindly ask that this thread embraces a little more courtesy please. I want to sincerely wish all of the threads respondents and creator all the best of luck and please take care of yourselves.

    All my hopes and dreams for you

    Ken

  • Thank you Ken,

    That was what I was trying to explain.

    I did say that my dr advised me to go privately due to long time to wait for an appt.

    Also,that she did ref

  • Sorry finger slipped,.

    She did refer me.

    Although, I did research my eye specialist and wrote to him and got a private appt and my Drs were happy to give them my med history when it was asked for.

    I get the feeling that they are happy to take the pressure off of the NHS, by doing this. I understand that not everyone can do this.

    Your post explains this.

    Night.

  • Hi Fibropop,

    I don't wish to take sides, but a GP is qualified to prescribe any drug that they think is needed for their patients.

    When I was diagnosed by a Rheumatologist 5yrs ago, she discharged me back to my GP with a diagnosis of Fibro, no drugs, or recommendations for them. My GP then prescribed me Tramadol, Gabapentin, and Amitriptyline, and later, also prescribed BuTrans patches.

    As a point of interest, since the Government declared that GPs working for the NHS had to take charge of their own accounts (2yrs ago). They no longer have to prescribe what a Consultant recommends for a patient if they decide it is too costly. The same goes for referrals to Specialists. You used to be able to ask for a referral as your right. Your GP can delay, or even refuse you a referral to a specialist, as they are the ones who pay the bill. Times are a changing in the NHS, and not always for the better.

    Take care.

    GP. ๐Ÿ˜Š๐Ÿ˜Š

  • Hi

    I understand that they can refuse to refer you, hence I suggested she might like to go privately. Write and ask a consultant if they will see her etc.

    As to the drug issue, I'm interested to read what you say. I will be tackling my GP on this issue, as she Did say she could not prescribe the stronger drugs without the consultants say so. I took this to mean that Drs in general in UK couldn't do this, if this is not the case I want to know why she said this.

    I am wondering if this was a practice policy, to save money? Or was it what they call a post code lottery? I am now determined to find out. I want to know I was told the truth, as I trusted her and because I went ahead and paid for the consultant, so I'd get the right treatment and meds. I am concerned now that I could have been prescribed the meds instead of waiting and paying for the consultant.

    I agree things are changing, but I do want to get to the bottom of this.

    It still doesn't change the fact though that if your not happy with how your dr is treating you, that you can't pay for a specialists advice/diagnosis, if you can afford it. Or change your dr, or Drs practice.

    Night.

  • Hi Fibropop, I think it is a post code lottery over medication. If you read the reply I wrote for Greenpeace a GP can even prescribe drugs that are not recommended by NICE for a particular illness such as LDN for MS or Fibro! However, when you tackle them they always appear to go on the defensive? I have experienced this myself over Julie whilst she was in hospital. However, next time I shall print off the links that I have pasted above and question them!

  • I am sorry to hear that you had problems with meds for Julie in hospital. It's so sad that we have to fight for the right treatment. I know it's happened as I've signed petitions to allow drugs to be given to people who need it over the price argument.

    I think printing it off is a good idea.

    I will be having a conversation with my dr though, as I do need to know what's, what, as I have put my trust in her. When she said that she was a general dr and I needed to see a specialist because she didn't know much about fibro, I took her to be honnest, maybe I could have seen another dr in the practice? My hubby was with me and remembers her saying she wasn't allowed to give me the meds, we now both want to know why?

    It's sad when you have to question the help you're given, when your health/life depends on it.

    Thanks again.

    Night.

  • Hi again,

    you are so right in saying that if you're not happy with how your Dr is treating you, that if you can afford to do so, then go private, or change your practice.

    Post Code Lotteries? they do exist, though they're not supposed to.

    My honest opinion is that our GPs in general do their best for their patients. In the last 5yrs massive changes have been made within the NHS and the changeover to GPs being responsible for their own practice accounts was a massive one. In fact, I think they still haven't come fully to understand all the ramifications of this change. A GP Practice is run like a business now, and you get businesses that excell, and others sadly who do not.

    I think when you speak to your GP you will find that what she told you was in your own interests and she wasn't trying to deceive you. Maybe just the way she put it across was a bit unclear.

    Take care.

    GP. ๐Ÿ˜Š๐Ÿ˜Š

  • Like you I have always understood that they are general Drs and do there best, I've trusted her judgement. Took her as honest, maybe she was honest to an extent. I understand that you see a specialist because that's what they specialise in. I'm quite willing to wait for appts at the Drs or hospital on NHS, but I feel maybe I was a bit misled? Anyway, I'll find out. If it's due to money etc, I will just point out that maybe she should have explained this. I might even think about moving the family from the practice if this is so. The meds for fibro arnt like the expensive cancer drugs etc. I'm going to ask my friends about their Drs etc.

    Anyway, I think it's time to try to get some rest

    Thanks for the info and chat.

    Sleep well, night.

  • Hi Greenpeace, this is totally correct as a GP can even prescribe drugs that are not recommended by NICE for a particular illness such as LDN for MS or Fibro! However, when you tackle them they always appear to go on the defensive?

    Take care my friend

    Ken :)

  • Hi Ken,

    You are so right there. I think that the majority of GPs stick to the Status Quo, as it's safe that way.

    You may have noticed that a lot of the Drs who prescribe LDN and CNB (Cannibus Pills) use their own Pharmacies. I sometimes wonder if they have consulting rooms, as they often do a Skype type on-line consultation.

    Our NHS is fighting for its life just now, and our Drs in surgeries and hospitals alike have been getting the collateral damage of the uncertainties in our country just now.

    What is it they say? Onwards and upwards, stiff upper lip and all that. LOL.

    Take care. ๐Ÿ˜Š๐Ÿ˜Š

  • agreed! :) :)

  • Very interested to know this, thanks.

    Hope you sleep well, night.

  • TheAuthor Ken, As always Thanks for your kindness!! your friend, Peck๐Ÿค

  • Thank you my friend, I am blushing again! :)

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