Hi I’m 25 I got diagnosed with fibromyalgia a couple of years ago and I feel as though I have just been left without no help I’m in agony everyday find it difficult to walk my gp says there isn’t anyone he can refer me to tells me to just exercise and eat healthy etc he doesn’t want to prescribe strong painkillers because of my age he has me on co-dydramol 500mg and I have been prescribed by a different doctor recently nefopam 30mg 3x day
Is there anyone I can get help from other than my GP
Sorry but you GP is not correct, if you are in the UK. I was referred to Guys and St. Thomas's fibro clinic. There are many other ones dotted around the country. At Guys it is a one time appointment which will last a few hours. I saw four different people including physio, psychotherapist, rheumatologist and one other (sorry fibro fog can't remember the other one). I cried with relief when I felt totally vindicated that my pains were real and I was believed. These lovely people put together a plan of action and sent it to my GP.
Now the difficult bit is doing your research and finding out what is available in your locality or if you are willing to travel you can request a referral to any hospital. It took 2 years for me to get my referral as my GP like yours didn't believe anyone could do anything she couldn't do. So persist in your request, put it in writing, follow it up with a telephone consult, that way your request forms part of your notes and isn't ignored or not recorded. On my telephone consult I had a meltdown as I was in so much pain, and hey presto one referral. It shouldn't be this way but I am afraid it is with some GP practices. The other route would be to ask for a referral to the pain clinic or self refer for CBT or other services, such as hydrotherapy etc. There is help out there for us, it's just that we have to be really pro active to source it and ask for it.
Good luck
Hello
Hmm sorry to hear your not having any support.
I am also 25 and I feel really lucky after reading your post. I was referred to rheumatology who confirmed I had fibromyalgia. I have been prescribed pregabalin twice a day. Maybe try going to a different GP?
Are you still working? Have you been through the occy health to get adjustments to your working day.
Excerising, just be careful as I know sometimes it makes it worse. Have you asked to be referred to rheumatology??
I also find taking co codamol when my pain is really bad helps, maybe try that?
I also use volteral gel at night time to help the swelling.. maybe worth a try.
Hope everything works out for you. 🩷
sorry to hear that sending you many hugs🥰 unfortunately like you had issues with gp surgeries but I had to learn to pester them for any kind of care/tests/meds etc otherwise I would still be undiagnosed. I documented my symptoms for weeks and read up on fibro before taking this to the doctor and also had to bring my partner that seemed to get the ball rolling which made me angry. Grown adult has to bring someone as a witness so they could do their job and once anyone I’ve talked seem to have the same issue as well.
Hope this helps and you get a event doctor that will listen xx
Hi, unfortunately as per the other comments you really have to fight your corner with fibro (like we have the energy and head space to do this!). Sometimes searching for the right doctor/GP is half the battle so try a few and yes take a witness! I ended up seeing a pain consultant privately (I got an appointment the next day after referral!) and we are currently focusing on high levels of certain vitamins, improving gut health, yoga, walking and I'm taking Duloxetine. It's not a quick fix I'm afraid 😔. I have done CBT previously for Anxiety and found this really helpful. Where I live you can self refer now for CBT so that is worth investigating. Best of luck with it all. I'm currently seeking a fibro diagnosis for my eldest daughter who is a similar age to you. She is struggling too, it's a miserable thing to be going through at your age. Gentle hugs x
Glad you joined the group and have bravely posted.This is a great group to post to whenever you need advice , a shoulder to cry on or just a quick rant about how Fibro is treating you which quite often can relieve the tension and stress you feel that adds to the pain.
You have a lot of Faraway Friends here who can listen and give you support , reassurance and tips to help in a way that friends or family often can't because we really understand what you are going through and how Fibro feels.
Your GP obviously isn't very knowledgeable about Fibro. Many aren't until they get patients with it and treating those patients gives them the experience . Often as a patient you find you may need to look up your options on good charity or health websites like Fibromyalgia UK print off the handouts or info on what drugs or therapies can be tried and then show your GP and politely ask to try new things.
Each patient is different so you can try a number of different medications or a combination of them before you find what works for you. The same is true for therapy, diet or exercise.
Drugs like Pregabalin. Duloxetine, Paracetamol, Mebeverine, Amitriptyline, Buscopan, various antidepressants and anti epileptic drugs are used either alone or in a combination to help manage Fibro pain depending on what your symptoms are and where your pain is worst depends on which things work for you.
It can take some time and trial and error , going back and forth to the GP and tapering up doses before you find what works but you can get there.
People can find it hard at first to have the confidence to ask the GP for things , question what they say and build up a partnership between GP and Patient were you work together to manage your Fibro.
So , sometimes , it's worth finding someone you trust and whom keeps you calm to come to appointments with you to ask the questions politely when you don't feel confident to do it. That can be a friend , family member or even a volunteer from a charity , or another local Fibro sufferer.
Most NHS Rheumatology Departments are rejecting referrals for Fibro diagnosis or care currently because of shortages or you are left on a very long waiting list. You can ask to be referred to the Pain Clinic for Fibromyalgia Management this is likely to be a long wait for an appointment at the moment but worth doing now , and chasing up if you don't here anything.
Getting your GP to refer you to Physiotherapy for Managing Chronic Pain , and checking if their are any online/ video NHS Pain Management training classes or groups is also worth doing. You can also look up on your local NHS site or NHS direct for links to joining free pain and CBT sessions many of which are done by videolink so it's not so tiring.
Keeping a daily diary is good , just jotting down what you would score your pain each day from 1-10, where the pain is worst and any other symptoms you have like nausea , dizziness , tingling, Fatigue and brain fog , to name a few. It helps you keep track of what is happening you and helps you see what triggers worse pain for you so you can adjust your activity or adapt what you do to stop the trigger. The diary is also helpful for you to take to show the GP and Consultants as proof of what is happening and to help them make better choices of drugs or treatments for you.
It will be worth you reading up on the information on the Fibromyalgia website and the pinned posts on the right hand side bar here to learn more about your illness .
Joining an online or face to face local Fibromyalgia support group is also good to find people you can talk with but also to get a local support network that can give you advice on what's available near you , who to ask to be referred to at your local hospital or physiotherapy service , and , importantly, to find a mentor or local Fibro friend to support you at appointments if you need one.
You may also find they have social or exercise activities that they do that you can join in on too to help improve your physical symptoms and build your confidence and mental health.
Good luck and take care , and post as often as you need with any questions you have , you will always get help to find your way , Bee
thankyou 🥰❤️
I do feel for you getting this diagnosed at such a young age. Suggest trying Traditional Chinese trained Acupuncturists to find out which if your meridians are lacking energy. Stimulating them, which you learn to relax into as they are really thin needles, can provide you with knowledge about your body and its reactions and pain. - B vitamins good as the other post says but avoid cyanocobalamin B12 like the plague. Methylcobalamin or Adenosylbalamin are the safe B12 chemicals, not derived from cyanide. - D'Ribose was the substance that gave me half my life back by giving me more energy and magnesium in many forms. - May Blessings and many lucky breaks of gifted doctors, kind friends and the finding of uplifting and encouraging new research find it's way to you. It will come. Gentle hugs.
I go to Bath Institute of Rheumatic Diseases at Bath Hospital. Absolutely brilliant but they are a Lupus Centre of Excellence which means in all things they must pass certain criteria. You don't need to have Lupus but this gives you a yardstick of what hospitals are the best for caring for autoimmune conditions. See Lupus UK website for centres of excellence. I just got diagnosed with fibro recently along with Lupus and Sjogrens a few years ago. Since going to Bath (on the NHS too!) I have been offered occupational health, dermatology, and physio (for fibro) with the hydro pool all organised by my Rheumatologist. I think surely you should be under a Rheumy and see them regularly. Unfortunately care differs so much all over the UK. I used to go privately for all my care but lost my insurance when I was diagnosed with a chronic condition. I have had hit and miss care on the NHS but Bath was recommended and if you can find another hospital in the country near to you like this with specialist Rheumatologists who know all about fibromyalgia then its like another world, another planet even in terms of care. Don't give up and don't take no for an answer.
hi my mum has lupus and I was officially being tested for this as my ANA was positive and I had all the symptoms but when I got referred to the rheumatologist I ANA came back normal and I was diagnosed with fibromyalgia I have suffered with chronic pain since I was about 4-5 year old.
It may be a good idea for you to have your ANA done again , and check whether the two tests you had previously were both sensitive tests, you can get copies from your GP if any blood tests you have had by putting in an easy request form at reception.
I only say this because , although it is possible to have Lupus and Fibromyalgia, or Fibro and something else , it is worth double checking that they haven't dismissed a Lupus diagnosis too quickly.
Although 97% of Lupus patients have a positive ANA , it is still possible to have Seronegative Lupus ( Lupus with negative ANA).
But there are also other types of autoinflammatory conditions that can cause your ANA to change or give you a negative result if you didn't have the most sensitive type of ANA test done . Things like Inflammatory or Reactive Arthritis and certain types of Psoriasis can often give false negative readings when you are still in the early years of development or you are not in an inflammation flare when the test was done.
Reactive Arthritis mirrors the symptoms of both Lupus and Fibro and like those illnesses there is a difference in how to manage it and which medications help to control it.
Having your inflammatory markers CRP and ESR , another ANA and a test called an ANCA test done by the GP , especially at a time of a flare up in your pain or symptoms would be a good option for you.
Do you have other symptoms as well as Fatigue and Pain you would be willing to list ?
As I say , it doesn't mean the doctors aren't right you may well have Fibro but you may not , or you could have Fibro and something else that is autoinflammatory so it is worth double checking.
Is there a specialist NHS clinic near you for Lupus or Fibro that your GP could refer you to?
If it is further away or in another county you can get help with transport.
Sometimes it does take having the more extensive tests done at a Specialist Centre if you have a family history of an illness to resolve a diagnosis or to spot if you have a crossover of symptoms.
Does your Mum see a specialist that could help ?
I am negative on all bloods except my dsdna blood test which was positive so that showed inflammation. Since taking hydroxychloroquine my dsdna is now just about normal too. I was diagnosed from symptoms for sjogrens and lupus from dsdna and symptoms. If you go to lupus uk they have a list of symptoms you have to meet to be diagnosed. You then need a lupus specialist rheumatologist. I've fought for over 10 years for a diagnosis of something as I was exhausted all the time. I got lucky but it was paying privately in the end. Without a diagnosis you don't get the medication and you just get worse but it's really not unusual to have negative bloods many of us do as so many bloods are negative unless your in a flare. It's so frustrating I know how you feel but many have travelled to the London lupus centre privately with all their medical notes as a last resort. If you feel you have lupus after looking at the criteria on lupus uk then keep fighting. It must be awful to feel so bad from a young age. I do hope you get somewhere. 🦋💜
Hi
I'm sorry to hear that you have been left without any knowledge about Fibromyalgia and pain relief. I'm not sure if you're aware that research has found that certain antidepressants can help with the pain of fibromyalgia. Apparently amitriptyline is the first one that they should try you on. I also have been diagnosed with fibromyalgia, however I'm am currently on a lot of medication for mental health anyway so the professionals feel that giving me any more would be counter productive. Currently my GP refuses to give me nefopam as he states that it is out dated, although this has worked for me in the past, how is it working for you? I am also currently taking 300mg x2 aspirin alongside 2 paramol painkillers every 4-6 hours, to help with the pain in my legs. So far this seems to be easing the pain, though I'm not sure of the long term affects. I hope this helps and maybe gives you hope that there are other solutions for you to try for the pain relief.
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