Having suffered from fibro since 2001.A new gp said today he wants to do a fm/a blood test.
Has anyone had this or any experience with it?
I feel he doesn't believe.
I left crying I'm so upset.
He talked about changing and reducing some of my meds when another gp there upped my amitriptyline a few months ago .
Help anyone
There is no blood test for fibromyalgia. There is only the symptoms we all have and the pressure points. So, I don't know what your GP is on about . Don't worry sweetheart.
Janecc12 Thankyou for your reply. It was awful yesterday, I felt completely ambushed. A different gp upped my amitriptyline a few months ago which has helped and now this one wants to reduce it! Me and my husband are contacting the other gp on Monday and words are going to be said.X
I don't know what is wrong with some of these Dr's. It's like some of them don't believe it exists! The amitriptyline will help and I hope your other GP is more helpful. Gentle hugs x
You are right, Janecc, some doctors don't think it exists outside our minds. It took 20 years and a Rheumatologist to diagnose me.
I am surprised at the thought of the FM/a blood test; it's not done in Britain.
Cheers, Midori
There is a blood test in the US but it is very controversial and not supported by NICE. The only blood tests you would have would be to look for/rule out other things. They don't use pressure points to diagnose anymore. How much Amitriptyline are you on?
Morning Cat00Thankyou you too for replying.
Yes I read that to.
What is NICE please?
I take 30g of amitriptyline.
I felt he was not believing me and trying to prove I don't have fibromyalgia.
X
NICE is the "National Institute and Health Care Excellence" it decides what the NHS sanctions in terms of treatments and research. The US blood test has something to do with inflammation markers more suited to arthritis, other people on here no much more about it than I do, but it is strange a UK doctor suggesting it all?
I'm on 100mg of Amitriptyline but that is prescribed by my neurologist largely for sleep and chronic migraines. 10 -30mg is a normal dose for chronic pain, so you are a on the higher end. However when prescribed as an anti-depressant you can go to 150mg.
It's terrible you left crying, sadly many of have experienced doctors like this, we are often dismissed and made to feel its our fault in some way. This may be part of the reason that fibromyalgia patients go to the doctor less after diagnosis rather than more and supports the notion we are not hyperchondriacs even if we are often treated this way. Really in my view hyperchondriacs have health anxiety and should be supported and treated for that, bc that is also a hard state to live in too.
HiI also take fluxutine (prozac)
I have chronic pain too due to an industrial work injury in which I was trapped etc that lead to a back injury.
I was so upset yesterday by him. I will not go to him again .
I know what I have, I know the pain.
I do not understand why he was like that. But you could tell he wanted it to be something else.
I've never been made to feel like that before .
Hoping the other gp will be more understanding when we ring on Monday. And hopefully that the other gp has NOT already changed my meds.
Thankyou for explaining about NICE i will show this to my husband.
I'm so anxious about talking to the gp Monday as they all stick together don't they.
He thinks it could be polymyalgia rheumatica
It might be worth joining the Polymyalgia Rhumatica forum, there’s lots of useful info. on there. To begin with my GP wasn’t sure if I had PMR or Fibromyalgia.
Thanks I'll take a look
My symptoms are slightly similar.. but more with fibro. Godsake why has this gp done this to me. 🤧
I can understand how this has made you feel so unsettled. Is your fibromyalgia well controlled? If not, maybe this is why your GP wants to investigate further.
It is.. and that's the problem. I only wanted to know where I go next to get help with adaptions etc highering the sofa and so on.
Who knows why he ambushed me. And all this with the new blood test etc
OK, that’s good that it’s under control. Maybe a question for him, if he thinks it may be PMR (which I believe is only helped by taking Prednisolone) why is it well controlled? Just a thought. 🙂
Exactly right.. You make a lot sense. Appreciate your help.
I'll let you all know after me and my husband have spoken to another gp there.
You are perfectly entitled to discuss the situation. Good luck for tomorrow. 🍀
Thankyou ☺️ I appreciate that.
Is that what's he's doing the blood test for then, because there is a blood test for that? My mother has had Polymyalgia for the last 10 years, if you do have that it needs to be addressed or the inflammation can damage you.I was on Prozac for years, thought it wasn't working so I took myself off it and then had a massive nervous breakdown 🙄 they wouldn't put me back on ot after that, which is a shame I thought it was quite a good drug. GP's normally favour Prozac and Amitriptyline bc they are old drugs so they have a lot of data on them.
I know it's not that. I think he's just a non believer.The things I suffer with from fibro is not the same as poly. Because I feel the same now as I did when I was diagnosed.
Prozac and amitriptyline are working well. So I have no clue as to why he wants to change and reduce my meds.
Well there is a big push from NICE to get people with chronic pain off painkillers and get them on anti depressants instead but you wouldn't think that would effect you. Hopefully you'll get better treatment from the other doctor.
Please keep your fingers crossed for me 🤞🤞🤞You've all been so helpful to me.
I'm so anxious about ringing up
that may be the result but I do not believe that is their intention. On the evidence they considered there is harm in the painkillers and gabapentoids they looked at and due to the meds only working in certain people. They did not consider tramadol at all which we reported as a mistake.
But there is relatively similar standard of evidence for the antidepressants but less evidence of harm. Similarly acupuncture no risk of harm and very little (but some ) evidence it could help some. If acupuncture was a med it would not have passed the test IMHO.
Just trying to separate the decision, motives and the effect it may have.
Is Tramadol a special case then, I don't know anything about it?
They did not think the evidence was good enough to consider in the metanalysis that they conducted. However, ourselves, Cochrane, a couple of NHS trusts and other stakeholders disagreed but were over ruled.
But as they are guidelines a GP can make a decision with the best interests of the patient in mind.
Its one of those things our American friends have had for a long time that I've only relatively recently heard about being used here...
Tramadol (I think in the US Ultram) has been over here in use for all the time I have had fibro so since 2007. Its just like the other meds in that it works for some and not others. It is a synthetic opioid so not without risk but it also promotes serotonin which is similar to what other fibro meds work on.
I am biased as it works for me at a relative low dose.
Seems odd for them to leave it out of the review. I found painkillers didn't really do anything for me in regards to fibromyalgia but I feel lucky I was given the chance to find out for myself before the NICE change of consensus. I wonder if thats perhaps because my path into fibro came from chronic migraines, IBS/bladder problems which are often made worse by painkillers.
So do you think there isn't a push to move people from painkillers to anti-depressants like Duloxetine then?
that may be a consequence but no there is a push to reduce the use of meds that have a poor evidence base (*see below) that also are show the potential to harm especially with long term use.
* I believe (and there is some evidence for this) that the results of our meds would be much better if we could target them better. If we knew in advance, that a group of people would benefit from lyrica for example then the results would be significantly better.
You need to see the other doctor again explain what has happened and how much it has upset you and what is this so called blood test.. plus you do not want the drug reduced as it is helping..also say can this be entered on your records.i had a horrible Dr like this and told my own doc that I never wanted to be seen by him again..I know this is not so easy these days due to shortage... I was made to reduce medications by pain clinic specialist as he said the amounts I was on would damage my other organs..are you on any other medications... Put this all to the Dr you had before.i am in UK and never been offered blood test for fibro..only to see if my arthritis was rheumatoid and lack of vitamin d which side affects when bad do feel like I was having a really chronic flare up of fibromyalgia.. try not to let it get to you as it will cause you more stress and make your symptoms worse.. good luck
Good morning Thankyou for your message.
I'm sorry to hear this happened to you aswell. And hope your okay.
I do take other medications but it's all working well.
I suffer from extreme anxiety have since childhood. It's all over my notes. And this guy does that. I was in tears in there. Came out tearful.
He completely ambushed me.
Can this be removed from my from my record??
My husband is fuming
Hi. Just googled. And don't think what that gp said etc can be deleted by them??
No you need to report to other doctor how ma he upset you so it will s kept on your record incase you have problems in future as some GPS don't really read through your notes online before they see you.. and just for your peace of mind.x
Hi Cat. Please can you tell me where you got the information that NICE doesn't support fibromyalgia? It would be so helpful
It's not that NICE doesn't support fibromyalgia it's that it doesn't think painkillers are an effective and safe in the long term treatment for chronic pain, that is conditions such as fibromyalgia but also back pain too.
the NICE guidance is here: nice.org.uk/guidance/ng193
How awful for you hun! I bet a huge proportion of people on here get blood tests back that are all normal! I know I did. It's a very poor method of diagnosing fibro. My inflammation markers came back normal too but the Rheumatologist diagnosed fibro straight away. Best of luck seeing another GP. It does seem like we have to seek out the right one as sadly many are not suitable for our needs. Best of luck, don't let anyone upset you and take your hubby or friend for support next time x
HelloMy hubby was going to come in with me but I thought I'd be ok.
He totally overlooked everything and my feelings.
I can't believe that he's doing the American test FM/A as the other lady said its for arthritis etc.
Thankyou for your kind words I'll let you know what's said x
Trouble is different docs look Nd do different things..I was referred to specialist during lockdown and they did bloods.. but because it did not show I had rheumatoid arthritis he was not interested and all I got was a phone call..even though I was referred for fibromyalgia..here they don't seem to give a flying fig..
I've found if a doctor uses air quotes every time they say "Fibromyalgia" then they are a non-believer. I've had it happen quite a few times.
Hi, I'm really sorry to hear that you have been treated like this. With all the extra stress, you may find that basic nutrients are running low, so it would be worth asking them to check your vit B12 and B9 (folate), vit D and magnesium. They may at least do some of those and you can test your own if necessary. I found supplementing all of those helpful, but ideally don't supplement B vitamins until you've had at least basic serum tests as it will skew the results. B deficiencies are often not looked for, have widespread body/brain-wide symptoms, and are tricky to diagnose so often missed. I've had fibro since puberty. One theory that some consider is that fibro has a genetic element which makes some people more susceptible to imbalance of neurotransmitters (and oestrogen) and therefore more sensitive to pain. One of those genetic SNPs or polymorphisms is something called COMT, an enzyme which is magnesium-dependent. I got a lot of benefit from magnesium (oil, applied to skin) and found afterwards that I have a predisposition to slow COMT function. You can speed it up with diet, lifestyle and supplements such as mag, B6, B9 and B12 in the right forms for you personally, but I'm afraid I had to find all that out for myself. Best wishes and I hope your talk with the other GP goes well tomorrow.
I personally had a similar experience with one of the GPs at my surgery so I kindly sent them an information pack for health professionals on fibromyalgia he later apologized you can request a pack is sent to the GP on the fibromyalgia uk website it's very useful website x gentle hugs to all x
Hi Jill.. That's interesting, thankyou.
I'm really worried this rude gp has put this on my notes..
I'm so anxious about ringing the other gp tomorrow to talk about what happened on Friday. And if I can get it off my notes and tell him about the other gp wanting to reduce and change my meds that are working.
I was so ambushed and felt bullied.
My notes are full of my mental history which is awful.
I'm in a proper state 😪😪
I'm so sorry that you have endured this my advice is call them up ask to speak with practice manager to give feedback regarding your negative experience and then ask for additional fibromyalgia training for staff as it it simply not acceptable, I was going through a flare up when it happened to me the GP told me to join a gym I could barely get up out of bed and he refused to acknowledge my pain or increase in symptoms I complained as previously mentioned and accessed the link to send fibromyalgia treatment options and training to the Drs surgery. It's unacceptable for any patient to be made to feel like this xx gentle hugs
That's excellent thankyou so much.It really was awful and I'm sad it happened to you too.
Do you think the practice manager is the best route?
Seriously thankyou x
I would make contact with them and advise how upset you are and how this is not acceptable via practice manager I would also use pals team they are also very good at sorting sensitive matters of this nature. I would also request that you do not see that GP again I hope this helps and you find some resolution. You should always speak up if you are unhappy with a service and no professional should be allowed to make you feel this way .
Gentle hugs please keep us updated xx
Try not to stress about it. It sounds like from your post he is suggesting doing blood tests and then only following the results they may consider changing your meds (only IF that is indicated by the blood tests).
It is important to do blood tests as they may flag up any changes since your last blood tests / original diagnosis.
You may have developed additional things which COULD also can additionally give some fibro like symptoms such as vitamin deficiencies such as B12 or Vitamin D, inflammation markers indicating rheumatoid arthritis or polymyalgia or even low thyroid levels. This does not mean he does not believe you - he is checking that the meds you are on are in his opinion the most beneficial to you at this stage and IF any existing meds should be tweaked to give you the best relief possible.
Remember if he didn't 'believe' your symptoms he would not be doing blood tests.
Do not let your anxiety cloud your judgement Bertjolly (easier said than done I know). Just because you have Fibro it does not mean you can't develop additional symptoms/conditions. My understanding is that there is no blood test in the UK to confirm Fibro - only blood tests to rule anything else out which may be causing your symptoms.
All decent GP's should invite you to discuss your results (if necessary following any changes/concerns flagged in your blood tests) and only change your meds with your knowledge, understanding and agreement.
When your results are back it is important to discuss your choices/opinions with your GP and not feel ambushed into doing something you are not happy with. You live with this condition 24/7 and know your body and what you feel does or does not work for you. They have 5 minutes to interpret your blood test results and make suggestions to improve your symptoms.
Sorry you feel your appointment didn't go well - some Doctors are better than others at speaking to patients and if this doctor didn't explain himself properly or explain why he said what he did by all means seek a further opinion today from the other GP today . Ask them to read back the notes to you from your 'bad' appointment so you are clear that any thing is corrected or clarified in this appointment. Hopefully this can then put your mind at rest and make you feel that you are believed and understood.
We believe you and we understand you on here because we are walking in your shoes - your GP is not suffering with this (i assume). You are the expert in your condition so it is important to share your feelings / opinion / knowledge with your GP so that they can understand how best to help you.
Good luck for today x
I only went to the gp because I'd moved to the to the surgery a year ago.I'd rang a different gp basically asking for help ie where to go for adaptions etc. He then said he wasn't sure but could I make a appointment to see a gp just to meet me.
I was not there for a review or to talk about bloods etc
He ambushed me and even when I broke down he still carried on. To me that borders on bullying.
So....I ring at 8.30 this morning and got told to ring back in 30 mins which I did. I then rang again.
I am still waiting for the practice manager to contact me. 😡
I didn’t even think that there was such a blood test?! Have you been diagnosed by a specialist? Your Gp shouldn’t disagree if you’ve had a proper diagnosis. x
Hi yes. I was diagnosed 22 years ago.No neither did I.. American apparently.
The gp is a trainee but that excuse the way he was with me.
Appalling
FM or Arthritic pain?
Numbness and tingling,is it normal for FM?
FM & mouth problems!!
Blood Tests
