I am getting desperate now to be honest. I have never had a referral to a specialist or a pain clinic int he five years since I was diagnosed with Fibro and ME. The last four weeks have been horrendous pain wise. I am now on Dichlofenac, 25mg BuTrans patches and as of today 20 mg of amitriptyline (has been 10 mg per night). I have been off work for the last fours weeks and cant express how stressed I am.
It took me an hour and a half just to get through to my doctors surgery this morning (they operate a system where you have to ring each day to get a same day appointment) by which time all the appointments had gone. A doctor called me a little while ago and when I told her I was still in allot of pain she suggested I go swimming and doubled my amitriptyline! How I get to a swimming pool when I cant even drive due to pain/medication at the moment is beyond me but I guess she meant well.
I am so desperate for a review of my care I am contemplating seeing a private doctor and wondered if anyone here had done the same please?
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Claire2461
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Hi, I haven't paid privately to see anyone about my fibro but I have done for other health problems and it was worth doing. We also paid for my daughter to see ent consultant and that helped too. It was only after things got so bad that I would have tried almost anything and at that time I was able to afford it. Wish you well with whatever you decide. Take care. X
I'm sorry you are suffering so much at the moment. I haven't gone private for anything but did change GP twice before I found one who is very good and understanding. She referred me to a rheumatologist but I asked her to refer me to the pain clinic. Have you told your GP you want to be referred? If they refuse then I would change to a different practice.
I really hope you get some help and that your pain eases soon.
I have been to four doctors privately for fibro and on the plus point you do not feel rushed. Two really helped and have since retired / given up. One said there was nothing he could do and the other made me worse.
It is not just the cost of seeing the doctor but bear in mind you will have to pay for the medicine as well. That has usually been the most significant cost.
My rent, water, power, telephone, TV and internet on my Mediterranean island each month as less than i paid for half an hour of a private doctor's time and far more effective.
If you are still feeling unhappy with your Healthcare you can talk to the Patient Advice & Liaison Service and/or write a letter to your Practice Manager.
In the meantime, you may decide to visit your GP about your pain and maybe if you download & print our factsheets about recommended treatments to discuss with them.
Here's a post from our FAQ section with all the links to our website you may need;
As others have mentioned unfortunately people with Fibro leave to go to other practices to find a Fibro Friendly GP. You may wish to ask this question here in the community, if anyone knows one in the area, just in case you feel like you need to leave your current practice. It shouldn't be the case but seems it happens, even I have had this experience too!
I wondered also if you have tried Warm Epsom salts baths or any muscle creams? Here is a post about muscle creams;
If you do decide on Private there is a FMS Clinic in London taking both Private & NHS referrals, so if you can find an understanding GP maybe they will refer you on the NHS, link below;
I completely understand your desperation and you must be exasperated by it all, please try to keep strong and despite how you are feeling push for the help you deserve. I found Amitriptyline didn't help for long and research suggests increasing the dose does not make any difference for efficacy in Fibro.
I may have mentioned about Opioids to you before maybe? if not research reports we have limited opioid receptors therefore they are not as effective as people expect (please Analgesics link in FAQ)
Also we often say it here in the community, what suits one may not suit another, so it is about finding what works for you. But I think that you considering asking the GP for the Pain Clinic may be a good first step in my personal opinion.
I really do wish you well and I hope you find some relief soon
I used to go private when I had insurance, but even then had to pay some of the costs.
If you do decide to see a private consultant phone and ask what their charges are and whether you can self refer or need a GP referral.
On an initial appointment they may well want some blood tests or other tests and then a possible follow up. Tests are very expensive so get them done through your GP. You may need to go back for a follow up appointment. If the consultant wants you to try new medication ask them to write to your GP to prescribe.
Most insurance companies won't pay up for chronic conditions so I went privately for diagnosis and then onto the consultant's NHS clinic. Many are prepared to put you on their waiting list especially if they know you are not insured.
I'm not much help I'm afraid but I'm truly sorry that you are suffering so badly. I was with a Dr for five years who kept telling me to distract myself from the pain. I would have liked to have chopped his arms off ! I then moved to my present Dr who is fibro friendly and sooo sympathetic. I've even asked him to marry me but his wife won't let him haha.
Life is still very painful but he helps as much as he can.
I am so sorry to read that you are not getting any satisfaction from your GP, and I genuinely hope that you can find the answers that you so desperately desire and deserve. I have (on many occasions) seen private doctors and consultants. I have a private specialist at the moment and she is wonderful. I would not recommend going private to anybody unless they could genuinely afford the costs?
it's tempting, isn't it? Try mentioning it to the doc and see if there's a response. They may realise you mean business and are really up against it. I'm sorry your surgery is a bit chaotic, but there's little can be done to change that. Hugs
I'm don't know if you are uk based or not. If uk based then my experience with private is that most Consultants are nhs Consultants, just working private too (normal practice).
I found them to be lets say 'more consciousness in attitude' but when it comes down to it seems to often be about a Dr's beliefs ie some good, some not about things like CFS/ME/FM (both I am blessed with grrrrr!).
A good gp is essential... if yours isn't helping do change. You also have the right to ask for a referral.
It's such a shame peeps have a battle on their hands to get help.
I have used a lot of private doctors and it is good if you can afford it and you want to be seen quickly. But in addition to the consultation, you might need to pay for tests and treatment, which can really add up. However, if the private doctor sends his recommendations to your GP rather than writing the prescription himself, then your GP can write an NHS prescription after he receives the letter. Also, if you discuss this with your GP, if s/he thinks you might need some tests such as blood tests or Xrays you can get them done on the NHS before the consultation and take the results with you - it will also speed things up as the consultant will be able to look at the test results at the first consultation - if you have to go for tests privately you might need to pay for 2 consultations, one before the tests and one after.Generally you pay say £150-250 for the first appointment, and about two-thirds of that for the follow up appointment. Sometimes if you see a doctor privately and you tell them it is just a one-off, they can then refer you for NHS treatment and you get on the waiting list earlier.
I have been to useless private consultants - I paid over £200 once to be told 'I was doing it to myself'. Bad enough if you are told that by an NHS consultant, but worse if you have to pay for that sort of news.
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