Fibromyalgia Action UK
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Can somebody with fibromyalgia please tell me if they feel the same

Hi I'm 26 years old and have been in constant pain in my kneck back arms legs wrists headaches you name it...the hospital and gp are doing nothing to try and find out what's wrong I had some blood test and a mri and nothing's showed up so they have given up.i have a 3 year old who's lost he's young energetic fun mum and I got engaged just 3 months ago I honestly am so fed up I've tried all kinds of painkillers tramadol cohodrydene think that's how it's spelt cocodamol I've tried wax tablets up my behind nothing works I'm looking the will to live I'm being refferef to pain clinic but they don't no what's causing the pain I can hardly walk I'm out of breathe n constantly tired.i found a page on fibromyalgia and i have all the symptoms does anybody on here feel similar to this? Oh and I'm hardly sleeping I can get to sleep but constantly waking up in pain I've never experienced anything like this. Any suggestions I took it to my gp and she said it's unlikely cause my mri was fine I just don't no what to do say or think anymore

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Hi, and a very warm welcome to the forum. I'm sorry that you are experiencing so much pain at the minute and not getting any help from your GP.

Did your GP say it was unlikely you had fibromyalgia because your MRI scan was clear? If so, they really need to go back to medical school ! Fibromyalgia does not show up in blood tests or in any MRI scans or x rays etc. Some GP's and rheumatologists will do what is called a trigger point test - they will touch certain areas of your body, and if they are unusually sore and tender then they may diagnose fibromyalgia, if all other tests etc are clear.

I would be thinking about changing GPs. Is there another GP at your surgery that you can see? If not, go back and insist that they send you to a rheumatologist if you haven't already seen one. If you have, then ask for a referral to a different one.

Good luck x

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That's exactly what I thought and had read up! Thanks so much.do you think from what I'm describing it's likely cause I'm convinced i have it and I have bipolar also and it's says slot about it being stress connected.

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Obviously none of us can say with certainty that you have fibromyalgia, but your symptoms do match some of the symptoms of fibro.

There is some thinking that major stress or trauma can be the trigger to set it of, but no one really knows yet for sure. xx

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secure.endfatigue.com/tools...

I've been searching the internet today for a friend who has recently been diagnosed with CFS or Fibro. I came across the above website, which explains all about causes and healing methods. It's being called "The SHINE protocol". You could google "SHINE protocol" - Shine should be written in capital letters and in inverted commas, as it stands for Sleep, Hormones, Immunity, Nutrition, Exercise. That website also explains the difference between Chronic fatigue and immune dysfunction syndrome (CFIDS or CFS) & Fibromyalgia.

I've been on the thyroid forum on HU for a few years, and what is being said about SHINE does make sense to me after all I have learnt about the body and our immune system.

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Being breathless and tired could point to anaemia. Have you been tested ? A full iron profile is needed and a Full Blood Count. Also test B12 - Folate - Ferritin and VitD. All need to be optimal and not just in range. Ensure you always have copies of all test results with ranges so you can monitor your health and check what has been missed. Results are legally yours so do not be fobbed off.

Oxygen is transported around the body in iron contained in the red blood cells so Low Iron = Low Oxygen = breathlessness and other symptoms.

B12 needs to be over 500 - Folate and Ferritin mid-range - VitD around 100.

If these nutrients are all low you may also need to look at the correct thyroid testing and not just the TSH.

Hope you soon find answers.

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Hi as stated before you can’t diagnose Fibromyalgia with scans some Drs don’t believe it even exists and it sounds like yours is one of them. Ask for a referral to a Rheumatologist or go to a different Dr. You need to keep going back make a nauisance of yourself. Sending gentle hugs 🤗

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Thank you for your support xx

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I feel just as desperate as you. Until 2 years ago I was fit and healthy. Then wham. At first I was diagnosed with polymyalgia but when blood tests kept coming back clear even though I was in agony , after several months of begging my GP to refer me back to the rheumatologist and after writing formal letters and even my adult chdten phoning and writing to him , I was finally referred back. I was then told the original diagnosis was wrong and I have fibromyalgia. However I seem to have it far worse than other people I know

I'm in constant pain all over my body plus I've lost lots of weight whereas others seem to put it on. In desperation I started seeing another doctor at the practice and have had lots of tests but nothing has shown up to explain the dramatic weight loss. I'm a changed person and it's ruined my marriage

I'm soon moving to be nearer my children and the gp told me last week it's the best thing because the main hospital where I presenty am is not a teaching hospital so resources are low whereas where I moving to has large teaching hospitals and doctors will be up to date with research. I cry all the time. My memory is poor and when I'm very tired can't remember simple things.

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So sorry to hear this it's horrible isn't it I'm in constant agony no pain killer works I'm so frustrated to think it takes this long for people to diagnose this is terrible

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Mine came on gradually but think you best bet is the pain specialist, most GP,s are not trained to even spot fibro the pain specialist should be far more aware of the problems and although no cure can be found yet, try everything they suggest however outlandish it might seem. Trying to distract when you feel bad is sometimes helpful, if you have a hobby or similar, I found crafts good, try finger painting with your little one, its messy and fun, no easy answers but if you need specifics someone on here will try to help.

Be kind to yourself.

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Hi, I'm sorry to hear that you're suffering so much and it's even worse when you don't get a proper diagnosis- you're in good company here! I've been lucky to be honest, my GP was open to the possibility I could have fibromyalgia as soon as I mentioned I thought I had it. A few blood tests, although not enough to diagnose it alone, backed up the theory and a quick phone call to a rheumatologist confirmed it. I think it also helped that all the medication she had prescribed that eased my symptoms were those known to give relief to fibro patients (co-codamol, anti depressants and pregabalin), while all the others we tried didn't help at all and those were the ones that help more with conditions other than fibro.

I would be interested to know whether your son was born by caesarean or his birth was traumatic? Things like that can trigger it. Also, many people with undiagnosed or badly managed ADHD go on to develop bipolar disorder and there is a high co-morbidity between ADHD and fibromyalgia so that's something to consider. I have both ADHD and fibro.

I've recently stumbled across a website with information and a support group for fibro sufferers in the UK who take the decongestant Guaifenesin and eliminate salicyclates from their regime in order to attempt to reverse the effects of fibromyalgia. It hasn't been proven and it's not easy to get hold of Guaifenesin in the effective form in the UK but it is safe and legal. Some people buy it from the UK online but that is usually the instant release form, whereas the extended release is thought to work better. That can be imported from America but it's expensive so following the advice of someone on the forum who lives in Germany and takes the German Guaifenesin, I have ordered from Germany, much cheaper than from America.

I'm not a doctor so I can't tell you if Guaifenesin is right for you and I can't promise it will work but in my mind it's worth a try if you're suffering, it is legal and harmless so I think why not? Too complicated to explain everything here but if you read a book by Dr. R. Paul Armand called What your doctor may not tell you about fibromyalgia, that will tell you everything you need to know. I wish I wasn't so useless with technology or I could put links on hereyou could follow but if you do a bit of your own research on Google with the key words I have used in this post you will probably happen across it yourself.

Edit: I think I just figured out a way to put links on here. This is where I ordered it from:

husarenshop.de/Guaifenesin

And this is the Yahoo support group I was talking about:

uk.groups.yahoo.com/neo/gro...

Good luck x

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Thank you so much x

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Hello. I'm so sorry you are having so many undiagnosed issues. A lot of your symptoms do sound like fibro but only a doctor can diagnose it. The shortness of breath and weakness you are having like Marz above said could be anemia, or it could also be pulmonary related something like asthma, or be caused by sleep apnea, or even be cardiac related. CFS is also something that tends to go along with Fibro, so you might want to consider having all or some of those areas checked as well depending on which ones coincide most with the symptoms you're having. It's not uncommon for people with fibro to have overlapping diagnoses that make all the horrible fibro symptoms become even worse. I do think a rheumatologist would be your best bet in either getting the fibro diagnoses, or getting that ruled out as the cause. Also taking a long, warm, soaking bath can often help loosen things up in there, and help the pain medication to be able to help you better, so you might want to try that and see if that helps you at all. Also, I will often use ice packs on my neck, back, and between my shoulder blades when those areas are really flaring up, and that seems to help some too. Good Luck and I hope you get some answers soon.

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Hi,

Sorry that you are feeling so bad.

I am 50 years old, feel exactly the same, had to give up my job, some days feel that it’s all too much to bare.

I was diagnosed with Fibromyalgia over three years ago.

You need to see another doctor if that’s possible. You seem to have so many symptoms of Fibromyalgia.

I really hope you get it sorted soon x

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Hi. I have just spent half an hour replying to your post and somehow managed to lose it all! I'm crying because I'm so upset!

I agree with almost every word that has been written to you.

I too suffer from fibromyalgia and like you, felt it had destroyed my life. I'm so sorry that you are so young and have a young child to look after. This makes your situation 100 times worse than those of us who don't have that additional committment.

Two absolutely vital things for you are a caring and supportive GP to help you on this journey and a partner, close friend or someone to fulfill that role. I don't have anyone, but I also don't have a young child to look after! I often wish I had a partner, but on balance I know that there is no way I could maintain a relationship with this!

Unfortunately, the medics have to rule out every possible cause for your pain before arriving at a conclusion, but you could perhaps speed things up by suggesting the use of Gabapentin or Pregabalin. Traditional pain killers will not touch fibromyalgia (not even morphine.) Those drugs are worth a try. Also, I definitely think that an antidepressant (I am taking 50mg of Sertraline a day) would help you to mentally cope with your situation. Amitriptyline too, if you need help with sleep, which may also help with the pain.

I was suicidal 12 months ago. I was in so much pain, I got myself admitted to hospital and spent 10 days there, having every test under the sun, before being chucked back out with no resolution. The breakthrough (if you can call it that) came with the knowledge I had acquired by then (due to my own research!) and the acceptance of my changed situation.

It is really good that you have found this site. I only discovered it very recently! You will find loads of information from others and knowledge is power!!! You will soon feel able to tell your GP that you definitely have fibromyalgia! Whether or not anything else is found, such as a vitamin or mineral deficiency, is a separate issue. You will start to take the lead in the things you try and will feel able to speak confidently and if necessary forcefully, about it. (Hence finding the right GP! Try several if necessary!!!

I've ended up taking as much time writing this as I did before! If I lose this I really will feel suicidal! On the other hand, this 'War and Peace' contribution may not be doing anything to help your distress! It's helping me, but that wasn't the idea! Ha!

One thing I wanted to say was that the ignorance of most doctors, never ceases to astound me. I have found that hospital doctors are the worst offenders! They seem to be determined to find a reason for the pain (at least one that they can understand!) and may well go on and on trying until they eventually give up, scratching their heads!)

I wish you love and the strength to find a way forward. You will do, I promise!!!

🥀

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I know how you feel im crying everyday n getting mentally weaker each day. Thanks for taking so much time in your post.are you still in alot of pain now they know you have fibro ? Xx

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Hi. I'm really really upset. I've spent a couple of hours replying to you and at the end it said I did not have the necessary permission to post! Iwas just beginning to feel really upbeat and optimistic. Now this has made me feel so upset I could cry. Someone (or some faceless algorithm) has just hurt both of us!

Take care.

🥀

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Hi there, I can relate to what you are going through and Drs giving up. My own health began to go downhill 19 years ago and got worse as time went by. Nobody could find anything wrong with me so eventually told me I had M.E and five years later, Fybromyalgia. Still the pain continued. I then decided to get a complete back copy of all my medical records and what I found was very revealing. As well as ignoring vitamin tests that were outside of the normal ranges, turned out my thyroid tests had been abnormal for at least 14 years (I was always told thyroid was fine). The symptoms of Fybromyalgia are very similar to Hypothyroid symptoms. Coupled with very low vitamin levels that compound the thyroid problem amounts to very bad health. This can also reflect badly on adrenal levels and starts a whole domino effect of downward health. Current thyroid treatment is inadequate and very few Drs know more than TSH. For someone so young especially, it is not normal to have this much pain. I can only urge you to have your thyroid checked but do not accept their 'everything is normal', get your own copy and post result on ThyroidUk health unlocked and get a proper opinion from people who have been in your position and some great admins. Also, it's worth checking the main vitamin levels as very low levels can result in severe and relentless pain. Always get copies of your tests and do your own research as Drs do not know about optimum levels and good health. Many people are needlessly kept ill when they could be getting better if diagnosed and appropriately treated. It is a difficult journey but at least one with hope . . . . Good luck!

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Thakyou ill be sure to do this x

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Hi

Sorry to hear your dilemma. Well, I, like alot, had the same issues..... months...years...different doctors...drs telling you theres nothing ... or its "in your head", to its just age and wear and tear... etc etc etc ....

All i can say is, keep at it. 1 hint that MIGHT help ...

When i went to the Drs I forgot alot of my issues, or saw the look on Drs face when I reeled off issue after issue so I stopped.... so I never really got my whole point across, plus i always ended up blubbering like a baby so it was always put down to "depression". After 4 years if being fobbed off, I decided to make a list of all my problems/issues/illnesses ..... and POSTED it to my Drs. ( you could take it in at an appointment) .... THANKFULLY by this time i had changed Drs and this one listened, he said he would disregard all the previous ideas from other Drs of what it COULD be, and start from scratch. He read through all my issues and started eliminating stuff with certain meds, tests etc. He quite quickly narrowed alot down and FINALLY i got a diagnosis.

Strangely, i was relieved!.. . Sad for the diagnosis but relieved that at last i was believed, it wernt all in my head and now I could look at coping and moving forward.

So, try to make a list of all the problems abd show your dr ..... worth a try, but dont give up hope.

Good luck!!

Shelley

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Appreciated xx

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Now your on the right medication etc how is the pain and is it constsant or often

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Hi. Have had trouble posting! Hope you're bearing up!

🥀

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I'm losing the will to live here, spending 3 hours writing and then having it all knocked back, but Sertraline to help you mentally cope with it and Amitriptyline to help you sleep!

xxx

🥀

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Hi Stevieswife92, first I want to give you a nice warm hug((🤗)). You are the same age as my daughter, she is an October baby so is my son. My heart 💜 goes out to you. Yes the symptoms you are describing sound like fibro. How long have you been feeling this way? Doesn’t sound like the doctors have done much to rule out other cause an MRI and blood work? I went to numerous doctors and specialists. My friends and coworkers were referring me to their doctors and some referred me different specialists who ran different tests and over 🤔? 6months or longer......my gallbladder stopped working and came out in length of time. Oh it was around 2yrs because mine started up when I was pregnant 🤰🏼with my daughter and I just thought 💭 it was high hormones good for her bad for me. That was in 92 😊 and it wasn’t until 94 when I was diagnosed with fibromyalgia and CFS. They need to rule out all other conditions that can cause the same symptoms. I don’t think they have reach that point with you. Have they checked your vit.B12 level? My daughter’s B12 level is very low. She is having low energy and memory problems because of it. Next time when I see my doctor next month I need to ask her about that if I remember or think about. 🤷🏼‍♀️ I hope you get answers soon as to what is causing your pain and other symptoms. 🤗💕🦋🌸🌿

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