I wanted to share some experience of my symptoms and my diagnosis in the hope it will help your symptoms.
Firstly after extensive tests at a rhematology departent with an internationaly recognised rhematology specialists, I was diagnosed with Psoriatic Arthritus and took the recommended drugs for 10 yrs, the drugs would not improve fibromyalgia symptoms and did my no good at all, in fact they probably weakened my kidneys.
10 yrs later, I was diagnosed with fibromyalgia from another rhematologist, different county. Just a 20 mins consultation, no testings at all - mind boggling 😒
So reading alot of your posts of recent fibromyalgia diagnosis, I want you to know they, the specialists, may not have the correct diagnosis. The other point is the symptoms of fibromyalgia are extensive, whilst in the main the condition is handled with antidepression drugs and anticonvulsants there are many other areas of your symptoms that may be attributed to another condition, coexisting.
I have experienced many cases of fibromyalgia victims that have other coexisting conditions that have not been diagnosed and may not ever be pickup, as the main diagnosis is fibromyalgia.
For example Irritable legs, IBS, lower leg pain, sleep disorders, etc
My expereince over the years has confirmed you will not get help for the individual symptoms, such as a full pain diagnosis, sleep diagnosis, psychatic diagnosis to establish a more accurate help to handle the very specific symptoms you are experiencing under the umbrela of fibromyalgia.
Sadly One drug such as antidepressant will not solve all the other symptoms, you need to ask your GP for additional referals that will focus on your main areas of need, one thing I have learnt they will not come to you, the NHS is not private health, it's a general national service.
I have attched a couple of links, Table 1 is good for you to check with your GP that these conditions have been checked, A tip, make a note of your results for your records.
Another thing here is, YOU and YOU alone need to take control of your health by keeping a note of what's happened and what you wish to achieve, don't leave your life in the hands of others, the system is bursting.
I hope this is helpful, this is only my expereince, others may be recieving all the support they need and that is great but for those who are struggling, start taking contol of your health and request the specific help you need for your symptoms.
There are many areas of your symptoms that you can explore, for example neurology for nerve pain diagnosis, sleep disorders, now this all comes down to the over stretched National Health Service, so "manage your expectations" NHS bless it's heart has many issues, so make a decision to take control of your health by understanding your symptoms, keep a record of your results.
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Having travelled the world and encountered the health services in many other countries both professionally and as a patient I can assure you that despite it's overstretched and underfunded state it is still the best I've encountered by a huge margin.
So does the NHS work?
Largely yes and, though it isn't perfect, we are a lot luckier than most, if not all...unless you can afford to pay.
Also, if I were diagnosed with fibromyalgia after a 20 minute consultation I would definitely be seeking a second opinion unless those 20 minutes included the past 10 years of contact with other healthcare professionals.
desquinnPartnerVolunteerFMAUK Trustee• in reply toCarlt
But its not really a 20 minute consultation. The 10 years later and the investigations at that time would have relevance and the intervening patient presentation and history as well as the GP appointment et al that led to the referral. I did not get bloods done at my rheumi appointment with the SHO and consultant. I would have been in there for 45 minutes but probably 20 mins face time with HCPs.
"10 yrs later, I was diagnosed with fibromyalgia from another rhematologist, different county. Just a 20 mins consultation, no testings at all - mind boggling 😒"
Sometimes my irony is too subtle but it is a result of my struggle to keep my biting sarcasm under control.
I was diagnosed 2 minutes into my consultation with an endocrinologist based on 5 years of tests carried out by my GP and the notes she kept and passed on.
As a former research scientist I obsessively keep notes and records of all of my visits, symptoms, medications and even the odd snake oil remedy tried but I find my GP's comprehensive record keeping makes mine superfluous.
The implication I got from the OP was that no progress had been made over those 10 years.
It is a great shame that so many folk here and elsewhere knock our NHS system.
Hopefully they express their frustrations at the ballot box, where it counts.
desquinnPartnerVolunteerFMAUK Trustee• in reply toCarlt
I was hoping that you would know my reply was not really just to you There is a lot wrong / could be improved with our NHS but it is better than a lot of other systems. It is more of an acute HS than a chronic one and that does not help us,
I agree with a lot of this but have issues with the tone for like of a better word. HCPs have many years of training and experience that we do not and this needs to be respected. But our own situation is relevant but fighting every decision or opinion will create stress and this will harm us. For 1/10 or 1/100 a fibro diagnosis may be wrong as statistics will mean that just as there are undiagnosed fibro people that should be there will be misdiagnosed fibro people.
distrusting HCPs is not a good starting point and remaining professional and communicating politely is key. Get a second opinion if it is needed but if the HCP is giving a relevant weighted opinion then listen to it.
arguing about which discipline should be looking at you is fruitless IMO as the system works the way it does and there is a need to conform to get seen effectively. A good doctor whether they be a GP or a consultant is more important than a neuro or rheumi consultant.
Differentials have and will always exist but we have a diagnosis by criteria that has a good basis in evidence and will be improved by more research or serology or whatever but this tone of distrusting the NHS is more in the distrust of the fibro diagnosis itself. Do not think this is what you mean perhaps. Building on what we have rather than tearing down what is there is the way forward and divert from the path when there is serology or other test that lead you that way.
The NHS does it's best but earlier intervention and more comprehensive help needed. Especially during pandemic this doesn't or can't happen. Still some doctors thinking 'you're just depressed take a painkiller and go away'.
Hi, the NHS does work. You’ve just got to find out how.
First point of contact is your GP. From that moment on everything that the GP prescribes, or does a referral for has to be within the framework of NICE Guidelines (National Institute Center of Excellence?) It also has to follow the NICE Pathway of treatment for your Condition. The GP has no say in making the Guidelines (Politics).
Your GP has to start simple and work up. They are not free to suit themselves.or you. They also, in a lot of cases have to get approval from The Care Quality Commission and in some cases have to get a peer review from a senior Partner in the Practice before doing this. If you feel that you’re not being listened to, complain to the Practice Manager, that’s why they’re there. Or your MP.
Our NHS was short of 144,000 nurses before the Pandemic, and goodness knows how many Doctors and other Services, and at this present time is on its knees with lack of beds, staff sickness, and lack of Professionals to operate that lovely new MRI scanner.
I worked for 30 years in the NHS, and know first hand a lot of its shortcomings. I retired 13 yrs ago, and some of those shortcomings still exist despite different Governments promising to put them right. I’ve also worked in other countries, and believe you me, when you have to pay for every cotton wool ball, sticking plaster, consultation, and every page that your case notes are written on, and have to provide proof of your Medical Insurance before any Consultation or Treatment starts, we are very lucky to have the NHS even with its present failings.
As mentioned above by desquinn , if you have a distrust in your Healthcare providers then you are not going to have a good relationship with them. It’s a partnership, you and your GP, and to make it work for you, you can respectfully make your points (good & bad) and discuss issues you’re not clear or happy about, and you can ask why a certain drug or referral is not being offered to you.
Ask Dr Google, How does the NHS work? It’s all there.
This is one of the most interesting articles I have read on Fibro. I agree that the NHS cannot do every thing and the start is to look after number one, that's you. I have been riddled with pain from Collapsing spine to having bi-lateral knee replacements, but still suffer.
I have posted before about some of the side effe4cts or interaction of tablets are not always right for you. So one size fits all, so to speak is not a good recipe to start with. I have said about keeping a journal or diary and either at the start of the day or end fill it out. If during the day you are suffering with headaches or blurred vision, tired then write it in the diary and if you can, just a little note as to why? I woke up this morning legs stiff took ages to get mobile just to get out of bed. Bad night sleep, room seemed cold, woke up with no blankets on bed, must have kicked them off.
n You don't need war and peace, but in six months you will never remember the bad day and how regular they are, and it also helps if you have any form filling to do.
My diaries (yearly one page ones/day) go back to 2008. and when you think how much information " goes missing" if I send anything in its registered post and note the tracker number on the day sent.
That said: This article I would recommend every one should read and down load BOTH LINKS, and just read the content save them on your computer/laptop and read both the post article, the article that comes with the down loaded links and to be quite honest it just all makes sense.
Some times in seeing your GP will not fix every thing and a simple change of diet or habits of eating late or not having breakfast can have a bigger impact on your nights sleep and daily routine.
As to does the NHS work, yes but some times it need people to complain so that better understanding of trigger point can find an underlying food or activity that may not only apply to you but others.
Here is a way of understanding that you are not alone, and any time you have a problem, no one here is judgemental, and you will be pleasantly surprised when you see others are like you and suffer in silence when there is no need.
Operations and tablets are not the only thing that can fix you. Some times just a "natter" and a cuppa does better.
SORRY, if this is a bit long but I just can't help my self. No pun intended......
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There is a lot wrong / could be improved with our NHS but it is better than a lot of other systems. It is more of an acute HS than a chronic one and that does not help us,
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Fibromyalgia Diagnosis
Fibromyalgia?
