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[Archie1977]

Hi.

I have not been diagnosed with fibromyalgia however early days in seeing specialist and after having high dose of steroids two weeks before the rheumatologist said it may have masked some results.

I have had two different professionals tell me I haven’t got fibromyalgia due to a good range of movement in my joints although every joint has been seized up and v painful especially in my neck shoulder chest and ribs. The pain at times is excruciating and debilitating.

I am shattered most of the time, hurt somewhere all of the time, scleritis in both my eyes and I’m so worried.

Every symptom of fibromyalgia I am suffering with but no diagnosis.

So much to write and not enough space but I’ve had these symptoms over the last few years but only recently have I had so much pain altogether at once. I’ve been 7 weeks off work already.

I’m 42, 2 children and missing out on doing my sport.

I am being tested for RA seronegative arthritis which is v similar symptoms to fibromyalgia but waiting results.

My question is.... if RA comes back negative And I don’t have fibromyalgia what the hell is wrong with me. Or do I get a second opinion? X

[JustDomUK]

Hi Archie.

It may be that you’re jumping the gun a bit. The most important thing is not to stress (hard I know) or worry. Tests take time and there are many things that can be causing your symptoms. You sound like you’re convinced your tests are going to be negative. Don’t let what the docs tell you put you off. Most docs know that you are just trying to find answers. I kept a log with an app called Chronic Pain Tracker on my phone. Try keeping a log because I can tell you that when you show the docs what is happening on a daily basis it can result in more direct answers to your question about what is wrong with you.

[Archie1977 in reply to JustDomUK]

I’ve kept a diary - detailed over the last 7 weeks and over the months and last few years I’ve been to the doctor about pain in chest, pain in shoulder etc but no one has ever put it all together.

I’ve been under an osteopath for2 years but in recent weeks things have progressed as scleritis has flared up, psoriasis, high blood protein levels and high platelets as well as all the pain and symptoms of fibromyalgia - the fuzzy head/ the confusion of words/ cramped and tingling feet and hands etc and more recently massive problems going to toilet.

I have had conflicting views .... I’ve also seen a homeopath and cut out gluten.

I’m trying my best but need some answers as I can’t work in this state and I’m a teacher.

[JustDomUK in reply to Archie1977]

Like you I had that problem of them putting it all together. I suffer from a condition called FND which is very similar to Fibro and in fact I’m diagnosed with both. My journey started down the FND road first because I stopped being able to walk (I’m in a power chair now). I can’t work in my office more than three days a week and most weekends are spent in bed in pain. My bladder doesn’t work properly, I’ve permanent tinnitus and my eyes are continually burning. I get a numb stomach quite randomly. These things have no markers. No tests revealed anything. I finally got to a neurologist and then had my first answer. Not as forthcoming as I’d hoped but that’s another story. It took 18 months to get diagnosed with FND and now three years in I’ve just been diagnosed with Fibro. What I’m really trying to say is that it’s taken three years to get some answers. One of the worst but most truthful one was from a GP who said to me “I don’t know what else to suggest. What do you want me to do?” I realised they don’t always know everything and don’t always know how to help. She later referred me to the rheumatologist for a second time. I’d been six months previously but with no answers because they only looked at one part. I can say it takes time and it may for you. Keep building up the picture that’s all I can suggest.

[LynseyMyers]

Hi Archie. I'm sorry to hear about the symptoms you're having. Unfortunately fibromyalgia is a complex condition to diagnose. Please don't allow yourself to be put off being persistent. I was diagnosed 12 years ago. I'd seen 7 different GPS, 3 ENT specialists as I had facial pain and it got to the point my GP panicked as my friend dragged me down to the surgery herself so the GP sent me to a psychiatrist as she thought I was depressed. I spent hours with the psychiatrist for him to tell me that I didn't have depression and he said it was frustration. I changed my GP surgery. Fortunately for me I ended up with a newly qualified GP who check certain points of my back and arms to see if it hurt. He seemed to know straight away. He referred me to a neurologist who was fantastic. Between them both they tested me for everything else but whilst waiting for a result the numerologist put me on medication straight away and told me if I keep taking the medication I should be able to manage the pain. They also referred me to physio who were unfortunately were very unhelpful. My advice would be to try get a referral to a neurologist. If your GP is difficult if your in a financial position to do it I'd just go for a consultation to a private neurologist who will then write to you GP with a recommendation of tests needed. If you need anything let me know. I've had the condition for years and I work full-time now and I am able to manage it well. I don't want others suffering unnecessarily. A neurologist is the best person to see.

[Archie1977 in reply to LynseyMyers]

Thank you for your advice.

[22amethyst in reply to Archie1977]

It took a year for me to get my diagnosis Archie so keep on at them and get answers.. try not to worry and stress because that just makes the symptoms worse ..I invested in an electric blanket which really helps in a flare hot baths meditation lavender oil all work for me along with my medication . I too work and am learning to live with condition but I hope you get answers and keep in touch with the group , we are all in the same boat here living with chronic pain but it is manageable 😇

[Hidden in reply to LynseyMyers]

Hi, Lynsey, please I need help - what do you recommend? How did you get over the pain? Any advice would be much appreciated x

[22amethyst in reply to Hidden]

Hi xx I was prescribed ampytriptaline but that didn’t work for me now I have been put on duloxatine 60mg which so far has started to help I also take naproxen for osteoarthritis in my leg along with co codamol ... there are other drugs gabapentin pregablin etc but you’re doctor will work with you to find the right one for you xx

[BILL-D]

Hi I was diagnosed with chronic fibro and also in need of urgent hip replacement due to bone disease. This was after drs n physio both had said I didn’t have fibro or anything wrong with hip. Their reasoning was I had far too much flexibility n movement range in my joints. It turned out another specialist diagnosed me as suffering from hyper mobility syndrome which means joints move more than in normal people. So now after a hip replacement n pelvis repair one lot of pain has gone but still suffer from fibro.

If you have any double jointed joints then you probably suffer hyper mobility. Unfortunately this can at times then become another easy way out for drs. Just as they very often just say any new pains are down to fibro they can also say the same about hyper mobile. So diagnosis can be good but make sure drs always test you properly in the future rather than take the easy way out

[NDStrong]

I have had episodes of episcleritis and scleritis for about 25 years. Sometimes in one eye, sometimes in both. It is quite painful. Used so many steroid drops in my eyes, I developed early onset cataracts. Every time a new eye doctor sees me, they get all excited and send me for yet another check with a rheumatologist. Nothing is ever found with bloodwork. Although I have flares of joint pain, exhaustion, skin lesions, etc. Only one rheumy said I have something going on, but he wasn’t sure what it was. He said I should go to Mayo. I have been told by numerous doctors that I do have Fibromyalgia. Sometimes episcleritis and scleritis are just idiopathic I’m told. So maybe, I just have Fibromyalgia and recurrent episcleritis and scleritis one said. Who knows, but it’s been a long and frustrating road. Best wishes on your journey!