I started feeling very unwell in June 2022. I was regularly at the gym running 10k and working out with weight 5 or 6 times a week. I started to feel unwell after the gym but just ignored it. Then in June 2022 one evening my fingers contracted into a claw. Over the next few weeks I started to get random twitching all over my body which would last all day in a certain area then start the next day in a different area. In August 2022 I started to get what I can only describe as strong buzzing electric sensations going up my legs from my ankles and in my arms starting at the wrists. In September this then started in my knees as well. I also began to get some pain on the insides of my knee caps and in my ankles and wrists. I was also very tired and dizzy. The twitching began to stop around September. In December I began to get intense pain in the back left of my head around my ear as if someone was pinching my brain. I had this diagnosed as occipital nerve pain. I also started to get migraine and pain in my left eye. I have found it very hard to get any help or treatment from my GP. At Christmas I was given Pregabalin for the occipital nerve pain which helped a little. Since then I have started acupuncture and the acupuncturist said he thought I may have fibromyalgia. I do not feel like the acupuncture is helping. I started to see an osteopath who said they could feel buzzing in my head, they wrote a letter to my GP about this but he said he would never listen to anything an osteopath diagnosed. I am able to go to the gym and lift weights but any kind of cardio exercise such as a gentle walk, house work or gardening results in instant electric feelings in my limbs, severe fatigue and blinding pain in my occipital nerve. I am always tired and never have any problems sleeping at night. I could sleep forever. I don't have a lot of joint pain, the pain is mainly in my head. I am still trying to get referred to the fibromyalgia clinic. But personally I am not sure if it actually is fibro. I have also just started 30mg of Duloxetine as well as 150mg pregabalin. Would anyone have any advice?
Thank you
Written by
robin_of_loxley
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Hello and Welcome, my advice is too get a referral from a doctor at your surgery too see a rheumatologist, a lot of people here have been diagnosed this way and would be good too get some straight answers in moving forward. I know getting to the gym is rewarding and keeps people positive but I’m wondering to tail off this for awhile and see how your tiredness goes ? Could you try some gentle swimming instead , I know it’s important for us all too keep a positive mind set but perhaps until you can get diagnosed what is going on ,see how you feel by having a break. Don’t be fobbed off by doctors push for a referral, let us know how you get on and take care .
Hi Robin, no one here is medically qualified to answer your question I'm afraid. But first let me say the pain of fibro would be felt in the muscles as apposed to the joints.
You say you feel your pain is mainly in your head.
The main symptoms of fibromyalgia are: Chronic, widespread pain throughout the body or at multiple sites. Many many people with fibro also suffer badly from not been able to sleep. Again everyone is different. I like you can sleep just fine but wake up feeling like a truck had run over me.
So IMO based on my personal experience it does not sound like fibro to me.
You really do need to go back and see your GP. Or another doctor for a second opinion. Like I say I am not medically qualified. Just giving an opinion. Good luck I hope you find some relief soon.
Thanks for your reply. I agree with you I think I have some symptoms that may be a bit like fibro but some of the mains ones like pain in joints and not muscles just don't add up. My personal opinion is it's not fibro. I am trying for more opinions but it is such hard work.
Hi Robin, I am just wondering as your GP taken any blood tests. To maybe rule out things like low iron and vit D. Lacking in one or both could maybe cause some of your symptoms.
Hi Dizzy, I have had 4 full blood tests so far and will have another next week. they all come back fine and the GP tells me Im okay. other than that I I can't get them to give me any other tests.
Hi Robin. Are you hypermobile? It might be worth checking your joint flexibility if you haven’t already. The Beighton score is easy to find online and fairly simple. It’s not comprehensive or conclusive but can be a good indication of pain that has a root ‘mechanical’ cause that won’t show in bloods. I have fibromyalgia and it led to my extreme hypermobility being missed for two years - everything was lumped into the fibro bracket - and all the while I was making things worse following physio advice for fibromyalgia & CFS. I do still have fibromyalgia as one of a number of conditions and it can just as problematic but there can be multiple over lapping things. My journey and diagnoses are complicated and ongoing but the buzzing, shock like, sensory symptoms (along with extreme fatigue) were the first sign something was as up for me. As others here are bound to say, you may need to be very persistent to get in front of rheumatologist - good luck and keep us posted.
Hi Winter. Thanks for your reply. I have not heard of hyper mobility I will definitely check it out that sounds interesting. So you also get buzzing and shock symptoms? I have not heard of others who have. Have you found anything that helps relieve them. I have tried about 20+ supplements so far as well as Accupuncture and osteopathathy. Nothing helps in the slightest.
Hi Robin. I found warm baths, massage and tiger balm helped somewhat but only temporarily. Over time it morphed into feeling more like neuropathy/nerve pain. It was mainly my hands and feet. I also had a lot of joint and muscle pain but the most stubborn pain was hands and feet. I was eventually put on amitriptyline which works well for me although I’ve had to increase the dose multiple times. Anti epileptics are good for some people but I don’t tolerate them well: for others it’s the reverse and they prefer them to tricyclics like amitriptyline. I also cut out gluten which definitely has helped too - it seems exacerbate pain for many people with either fibro and/or inflammatory conditions. It’s still unclear which condition caused the sensory issues and the buzzing/tingling/pain in those areas but thankfully I did get it under control in time. Hope that helps!
Hi pal what a nightmare, I hope the doctors done bloods? Obviously I’m not a doctor, but as they advised on a MRI scan or anything like that just to rule out other things?
Hi Villa, I have had an MRI on my head that was clear but not on my other joints. I really want at least one especially on my left Knee which seems to be one of the worst areas.
I think you need to be pushing for a federal. Was your nerve issue diagnose by neurology? I think a neurology and rheumatology appointment are both needed. That’s the only way you can start to get somewhere.
Hi Leo, yes my occipital nerve problem was diagnosed by the leading neurologist at the hospital. His treatment plan was to go home and rub it twice a day. I haven't managed to get in front of a rheumatologist yet.
Hi Robin, I'm sorry to hear you're dealing with the pain and fatigue you're describing.I saw that someone else mentioned blood tests. Might be worth asking for a test for Lyme disease too.
I really hope you can get a referral from one of the doctors at the surgery you go to.
The only reason I say this is because the older doctors dont like to be told how to do any thing out of their range since they became a G.P The younger ones want to help you feel something is being done and they want you to feel better,I only say this because I went through it,
Mine also told me that she had been to a course with the rheumatologists so they don't get overwhelmed and people are missed,I hope you get to see the right person you need to help you getting the right treatment
If your GP's aren't being helpful at your practice think of changing surgery's. The standards of practice do vary, try and find a GP who is able to relate to your issue or who has an interest in neurology or rheumatology. The nurses or receptionist can be helpful as to which person has these interests.
I would agree with Debsdelight idea to try one of the younger GP's, they may be more up to date with new ideas.
What ever you do don't give up!
I am visiting my GP's nearly weekly at the moment with various symptoms, although my surgery is good the GP's don't seem to put a lot of the symptoms together to form a diagnoses. They are doing lots of tests though!
One of the nurses suggested if my symptoms get to bad go to A & E as they have all the necessary equipment their to diagnose you. I mention this as it may be an idea for you.
I very much agree with this - I changed surgery as I was being told I was anxious and needed to slow down and allow myself to recover from covid. Oh and to breathe more deeply 😆 It was maddening but as soon as I was out in front of a good GP things started to move. It’s good you’ve been through neurology already and had a head MRI robin_of_loxley as that will have helpfully ruled out neurological things a rheumatologist will want to know have been ruled out. The wait time for rheumatology is up to 18 weeks in places but I found calling the appointment admin weekly helpful as cancellations do come up last minute.
Thanks for your reply. I have thought about changing surgery. My friend is a GP and she has said that I can move to her surgery but I don't really want to become a burden on her. I will persist.
Hello, my story is a very different one to yours but for me too it was suggested that I might have fibromyalgia and it has left me unconvinced. While fibromyalgia is absolutely real, not all joint/muscle pain is a result of it - there are so many other conditions that could be behind it. In my situation I cannot help but feel that it's been a lazy diagnosis to get me off the books. I echo what others say about finding another GP. It can be exhausting having to fight your corner but this is about your health and well-being and sadly there are times when you have to do battle to be heard. Also, some thoughts on reading your story (I am not a medic, but these rung some bells). Maybe I have missed it while reading through the responses but have you had a detailed investigation of your optic nerve by an optician with the latest technology? And the MRI scan of your brain was it with or without contrast? Having one with a contrast injection makes a huge difference to what they can see/find/identify.
Thanks for your reply. I have seen an optician for a 3D scan last week that all seemed okay. The MRI on my brain was without contrast. That sounds like a good idea I will mention that again I get the change to get another head scan. I am paying for a private MRI on my knee this afternoon. but again that is without contrast as the cost would be even more.
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