I have had fibromyalgia symptoms for the last 2 years and was diagnosed about 5 months ago, after having what feels like every blood test under the sun, an ultrasound and an MRI. I tried amitryptiline for a couple of months but didn't get on with it, and have been on gabapentin in increasing dosages for the last 5 months, but my symptoms just keep getting worse. I feel faint most of the time and have problems with blurred vision, and increasing problems with muscle tremors which are making it difficult for me to do my job. And of course the widespread pain.
My mum is urging me to go back to the doctor, have more tests, get a second opinion and get referred to the fibromyalgia clinic in London, but I just can't face going through all that pain and spending that many spoons. I hate going places with my fibro and blood tests make me feel like I'm going to collapse. I can't see how that will make it any better - after all, there's no cure for fibro, so what's the point?
Am i crazy here, or is there anything out there that's helped anyone else?
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shark2691
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Hello and welcome, I think your Mum is right you should go back to your GP, whilst there is no known cure or fibromyalgia there are treatments that may help a little not all are drug based, physio is helpful and a course of CBT can also help you to accept the fact you are ill, instead of trying to fight it, which is exhausting, get all the help and information that is available. This forum is the best place to come for support we are a friendly bunch. All the best. Lou x
I too thought no point seeing any more doctors , I have had fibro for nearly 30 years , and I was wrong , most of the time there is something new,, even if I just learn what not to do.
I am so much better now most of the time than when I was first ill.
Welcome to the forum and it is wonderful to make your acquaintance. I sincerely hope that you find the forum useful, informative and loads of fun! I am so genuinely sorry to read that you are suffering and struggling so much and personally (if it were me) I would go back and get all the medical help that I could.
There are other medications that you could discuss with your GP / Medical Specialist and some of these could help you? So please do not suffer unnecessarily. I want to genuinely and sincerely wish you all the best of luck.
Hi I have the same history. I thought it was to do with my surgery then finally diagnosed last week. I too have tried gaberpentine and ametripoline and did not suit. I paid to see rheumatologist as I was fed up with docs and they were focusing on bowels as the found divitioulitis and gastritis (sorry about spelling) up to 5 years ago I was fit and well but then found I have endometriosis and fibroids so that was my trigger. So I started on pregabin during the day (first couple of days made me drowsy but better now) zoplicine at night which has worked great unless husbands snores wake me! I bought a secondhand treadmill to limber up on and they put me on the fodmap diet to help with tummy issues. I have been referred for CBT and I have found an acupuncturist who does a mix of massage and acupuncture which I have found really helps.
I did too much yesterday as I felt great so that is something I am having to learn is to pull back.
Stress is my trigger so I recommend logging your flare ups and seeing if there is any coloration with your life events. I was in a role where I was unhappy and starting my dream job next week.
Hi shark, I think it's always worth getting other things checked out. When you had your blood tests did they check B12, ferritin and folate levels? I have fibro, low B12 and underactive thyroid, these all provide a nasty mix of symptoms. I'm now on injections to improve my B12 levels, and they have helped a lot with the fatigue and muscle pain. MariLiz
Thanks MariLiz. I have no idea what they checked to be honest... I know there were about 30 different tests from the gp, rheumatologist, neurologist and nephrologist but they never told me what they were :/
Hi shark, you are entitled to ask for copies of your test results, and the GP might ask for a small contribution towards costs of ink and paper in printing them for you. A lot of us on here get those copies so we can monitor our own progress ( or lack of progress!) It also means we can asks for tests that haven't been done. MariLiz
This sounds odd, surely if you are registered as a patient with them, they will know your address. Perhaps you need to put it in a letter to the practice manager? MariLiz
I agree with needing to see the GP again, so ok fibro cant be controlled but there should be help to make it manageable, and if it is manageable and you have coping mechanisms then hopefully that will help everywhere else. The kight headedness could very easily be down to low B12 levels or even am overall low blood count, these are easily rectiified and if you dont relish the B12 injections there are actually tablets that can be given instead. vit D deficieny can lead to increased joint pain. Blurred vision should always be checked as there are a lot of things that can cause this.
i went gluten free after advice from my rheumatologist and although diagnosed as non coeliac i have not become deficient in any of the above since and my pain increases after i have taken in some gluten, never mond any effect on my bowels.
I understand it seems like such hard work, but look on it eventually giving you an acceptable quality of life which you are more than entitled too. i notice that you dony like going places and wonder if it might be possible to get some CBT therapy, whilst it doesnt work for everyone it did help me grieve my old self and accept whom i am now. It hasnt made me suddenely cope with everything but i am now at a stage where i will go out and socialise in my chair without feeling a fraud or too much of a burden to folks
I would agree with many of the replies you have received - go back to your doctor.
Amitripyline an Gabapentin are the first choice drugs prescribed by GPs. I also tried then both, I got no relieve from Gabapentin on 300 mg per day and so came off them (gradually). however, what I didn't know was that therapeutic dose for pain relief with Gabapentin can be as high as 1200 mg per day. My GP did not inform me of this. You may need to persist with increases in dosage, gradually.
I then tried Amitriptyline at 30 mg per day but found I could not tolerate it. I was then put on 30mg Nortriptyline which is similar and which I can tolerate. Both this drugs can be increased to a therapeutic dose of 60/70 mgs. I found that Nortriptyline has reduced muscle cramps, spasms and RLS which allows me to sleep a little better. You may find this helpful to you if you ask for it, however it is dearer so GPs will not suggest it themselves.
There is also another medication similar to Gabapentin but fibro fog has struck and I cannot recall the name! Anyway, the point is, make sure you get the right medication at the right dosage to give you the most optimum pain relief.
The beauty of this site is that we all care, we all 'get it' when you say you are suffering and we can all advise you on what to ask for - so you don't get fobbed of by your GP - remembering that some are better than others.
You must also ask for a referral to the pain clinic at your local hospital physio dept - you will then have access to a 'symptom management course' which will help you to manage your life and symptoms; I found mine a great help.
The other thing is to make sure that your employer is aware of your condition, to give you the protection of the Disability Discrimination Act, if you haven't done so already. Print off information about Fibromyalgia to give to your boss so that they know what you are going through, hopefully this will ease some of your anxiety about your job.
Hi there, wellcome...your mum is right, to be fair, gps does not always aware what you have got..or perhaps they might not understand how we feel as a FM patients, hence organisation such as FMAUK is very useful for us...if you fed up of being sick and like to share how I get better each month, fire me your email I share with you what I have been doing..it work for me...
i was first diagnosed with sjogrens syndrome and with that i get blurred vision as if i am looking through a water bubble and thats because my eye glands are dry and i get drops for this ... maybe worth asking about this?.. i dont know if the dry eyes are part of fibro too... big hugs xx
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