Just got told the doctors think I have fibromyalgia and because I’m 16 they are “hesitant” to help me anymore then giving me leaflets and self help websites. They tell me to try exercises but I’m a dancer and it’s too much for me to even dance so what else can I do.
Please help
Hi
Sorry to hear this. Doctors are reluctant to give out meds for various reasons..what can help you is to research on line about diets for fibromyalgia. For instance, I have to avoid gluten, sugars, red meat and dairy as these foods cause more inflammation and more pain. Supplements are a MUST - get doctor to test your vit D3 levels - supplements of 40,000 I.u. weekly have helped me to lower pain and exhaustion. Doctor can prescribe d3 or you can buy it over counter.eat lots of kale and other leafy green veg. I know it seems weird but I believe that this illness can be treated solely by diet. I also drink plenty of kefir and regular portions of chia seeds.. Magnesium is reponsible for over 300 processes in the body and this too can ease pain. Anti oxidants are important too e.g cranberry
There is alot of research on line that can help you work out what's best for you. Good luck 😊
I agree especially if so young best to try to beat it b4 it beats you by the time a certain age can be too late...good luck xx
Sorry to hear that you are struggling, swimming is easier on the joints.
I’m just wondering if you could have Ehlers Danlos Syndrome (EDS)? It is quite often misdiagnosed as fibro, the reason I ask is because you are a dancer, a lot of people with EDS used to be dancers or gymnasts when they were young (because of the stretchy joins). Please have a look at the symptoms and see if you can recognise yourself in the symptoms. It’s possible to have both fibro and EDS,
I hope you get some help with your health
Take care
Because you are so young and a dancer and if you have a planned career in dancing, I think you need a definite diagnosis. It's not good for your GP just to Think you may have it. Maybe you should see the GP again and take your mum with you for a bit of support. x
I used to teach I have I,D,T,A but its useless now,,to be able to continue with some then try to get a programme of hydrotherapy to keep your muscles toned and stick with it if you get it...
Try a different form of exercise like swimming or aqua fit. It is easier on the joints.
Hi Nina, So sorry to hear you have this awful "condition" at such a young age. I have been doing a lot of research recently having decided to take responsibility for making myself as well as I can, having looked deeply at what in my life brings on so much pain and deep exhaustion.
The word 'Fibromyalgia ', in my understanding, means the painful inflammation of the myllin deaths that cover our tendons and nerves. Because pain is 'felt' in the brain, where our neurotransmitters dump it, the pain of Fibromyalgia may be experienced as coming from anywhere and everywhere.
Last week, I read some research that said that Fibromyalgia is a form of CFS ( Chronic Fatigue Syndrome/ME) in which pain, rather than exhaustion, predominates.
Sorry, honey, you probably have this double whammy.
Post-viral CFS is often a left-over of an illness, such as Glandular Fever - or even a tooth extraction.
Whatever the cause, neither CFS or Fibromyalgia can be treated with exercise.
Simply LIVING with these conditions takes from the body the same amount of energy as running a marathon every day!!On
The pain we feel in our muscles is often caused by a build-up of lactic acid in the same way that athletes do when they over-exert themselves.
From my (sorry, 10 years' ) experience, I'd politely and, respecting we are all different, suggest some of the following actions you can take to regain some of your personal power:
1. Get blood tests done for latent viruses, etc. (If you are in a Lyme Disease tick area, get this tested too, as GPs often confuse the symptoms)
2. See your dentist and ask him to check if there are any chronic / dormant infections below the gum line.
3. Get the nutrition your body needs in the form of can most readily METABOLISE. I ended up, to my total surprise, surfing Body Building sites to get the Supplements I needed. (Just noticed there's a post, below, highlighting the benefits of Vit D3 and Magnesium, which I wholeheartedly endorse). To these, I'd add at least L-Tyrosine and L-Lysine as useful Amino Acids, and a good range of Digestive Enzymes.
4. Re: Magnesium. There are several forms.
a. Magnesium Citrate. I started with this form. D3 helps you absorb it better. (Also, I'd imagine as a ballet dancer strong bones are important to you. If you take Calcium, you r exhausted body will need Vit K and D3 to make sure this goes to the right place).
b. Magnesium Chloride. I get this in powder form and follow the instructions for making my own Magnesium Oil but, instead of creating the suspension of Magnesium in water, I replace the water with a water-based Arnica Gel (personally, I use SBC). This make a runny massage 'gel', which I use on as many of my painful myllin sheaths, tendons, joints and muscles as I can reach. (My poor, confused Pharmacist tells me it's the massage that's helping rather than 'my' gel, but - as I was once told - you're no being paid to think!!!
c. When you get to the stage where you're able to notice your brain fog, replace your morning Magnesium Citrate with Magnesium L-Threonate, leaving your nightime Mg Citrate to look after your digestion while you sleep. The Theorate form is able to cross the blood brain barrier and help re-energise your mitochondria here.
5. Be gentle with yourself. In your quiet times, visualise yourself doing what it is that makes your heart truly sing. Hold onto this!
6. Set yourself mini-targets which will make baby-steps towards this. (I once set myself the target of making my dog wag her tail, get my car to purr and catch myself smiling at least once per day.) Good luck with creating yours!
Dx
May I suggest that you look up Dr Coimbra and The Coimbra Protocol? He has been successfully treating fibromyalgia with high doses of vitamin D. He is a Brazilian neuroscientist and has treated many thousands of people over the past 20 years with a 95% success rate. There is a lot of information about him and lots of testimonials on the internet. Good luck.
You have to have at least 11 pain points to have fibromyalgia. Doctors “think” you may have it. You may not have it. I was told I have it ,but I don’t. I just have some worn joints and take Paracetamol and Naproxen, to help the pain.
Peter
What is used now to diagnose fibromyalgia?
I’m on painkillers and antidepressants and they have saved my life. The only chemical vitamin I take is Vitamin D.
If you have a good diet you don’t need all those chemicals, vitamins or amino acids.
Dear Orchidman,
Some of us choose to take painkillers, as you have done, others choose to change something in our lives that we feel might help.
Re: my diet. I have always eaten a good, healthy diet rich in fish, seafood, veggies and salads. I did drink rather too much wine, but.....
earlier this year, having noticed that painkillers no longer touched my pain and, in some cases were making it worse, I came off the pre-gablin I'd been on for years. The withdrawal symptoms were horrendous. During this time, I could only eat dry rice cakes and drink tomato juice! Then I started taking Duloxetine. This also affected what I could face to eat, and I ended up eating dry rice cakes and drinking water. Anything else and my stomach churned! After another couple of weeks, I was back on a slightly wider range of food, but my right arm and left wrist "stopped working" . So, I was back onto veggie and fruit drinks. I hadn't been able to face drinking wine or coffee for all this time, so decided to do a 'cleanse' and start retraining my body all over again.
The reason I take the supplements is because I 'intuit' what my body needs. I have given up Codeine and anti-inflammatory tablets.
By coincidence, I had to have a wisdom tooth extracted in the middle of all this. That wasn't meant to happen, but the Dentist found a latent/chronic infection 'Boeing's deep in the gum.
(BTW, I'd seen that BBC4 program on Tudor deaths being caused by Gingivitis. My dentist told me not to worry, Gingivitis doesn't hibernate...... It simply carries on eating thro until it kills you. This could have been the remains of any virus or other infection waiting to flare up!)f
The first GP to to give me a diagnosis, was in Wales. It was 2010, and he told me I was suffering from Complex Regional Pain Syndrome (CRPS). Unfortunately, the Practice Manager didn't believe this existed, very much in the way ME was denied for so long.
Instead, I was given a list of diagnoses and sent on an in-patient pain management programme.
It was only then that I read my full diagnosis:
- Osteoarthritis of the neck with spondylosis
- Chronic Pain Syndrome with Fibromyalgia
- Chronic Fatigue Syndrome / Post Viral Fatigue
- Arthritis of hips, knees and feet
- Mucked-up feet (the result of 2 failed operations that were meant to fix my prehensile toes!)
To that has been added more recently:
- Tendinosis of right shoulder and both wrists. ( Ho hum! Turkey sausages for Christmas dinner again this year!!!)
Having reduced my medication from hundreds of tablets a week, I now take 1 x 60mg Duloxetine a day - and feel more in control of my life than I have for years.
However, I know that all the damage my body has taken over 63 years is still there and, unless I keep warm, don't travel and remain sress-free, the pain will come back.
Also, because I changed my meds, started on the supplements, updated my diet, had a wisdom tooth out and drink less wine, I have no idea what worked!!!!!
It seems you have chosen to remain on the prescribed medication route. I'm glad that works for you and wish you a future free of pain and depression.
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