I am at 37 year old male UK, my symptoms started in 2019 with really bad right sided head pain which lasted for a good few weeks went back and forward to GPs had bloods taking and then got sent to hospital for a CT with contrast of the head. The results came back all normal but my symptoms had manifested into having really bad night sweats,nausea, feeling very light headed/faint like and mild pains in the chest, so then i got referred to a infectious diseases clinic as this all started after i came back from a week in Scotland and i work with raw sewage.
I had a mass of test done in this clinic 10 different blood test, 3 stool sample, 24 hour urine sample, ECG and a CT scan of head and torso with contrast and from all these test everything came back normal.
So back and forward to GPs i went had lots of blood test carried out for the like of Lymes, Weils and H pylori. I had chest X-ray, 2 more ECGs and i paid for a private MRI scan of my head all these test came normal as well.
But my symptoms had gained.
Brain feels fatigue when talking and learning stuff
dizzy/foggy heads and if i turn quickly i seem to get dizzy very easy
feeling like am not in control of my legs but i can move them fine
Migraine type head pains
burning/ itchy feeling in back of head ( lasts for a week or so )
waking up dizzy for short time ( only happened a handful of times)
left blood shot eye ( comes for a couple of days and goes)
nausea mainly in morning
chest pain/ burning in middle of chest( comes for few weeks and goes again)
Arm and leg muscle twitch( mainly when resting)
stiff and achy index and thumb on both hands( comes and goes)
crampy feeling in leg muscle ( only had this a few times)
burning feeling on outside of left calve ( only had this for a few days April 2020)
a feeling like i have a hair in between my big and second toe of my right foot ( lasted about a week)
pains in bottoms of my heels
tingling in my left toes when walking or i tap my toes( lasts about a week)
hands feel like they are wet ( only had this once lasted a few hours)
tingling in hands when clapping or using power tools
random spikes in heart rate only lasts a couple of seconds
feeling pulse in whole body
feeling shaky or nervous
stomach pains
never feel fully rested
muscle fatigue
tinnitus only lasts a couple of seconds
tongue feels arched ( lasted a few days)
So i was referred to a syncope clinic and had a tilt table test, 24 hr heart and blood pressure test and a echo of the heart these all came back normal.
I had a 20 mins phone call appointment with a rheumatology all he seemed to be looking for was arthritis as i have had psoriasis since 2013. so had X ray and echo of hands and feet and bloods done which have all came back normal.
So now i have been referred to neurology which i seen on monday but felt very rushed and all she seemed to focus on was my migraines. I have had some bloods taking and she is going to send me for more scans of the head and neck to rule things out but she does not think anything is going on ?
I have had 2 eye tests, private york food intolerance ( only mild to cows milk so now drink oat milk), private CBT and private Physio ( dry needling and massage).
I have been only sertraline 50mg for months made no difference
lansoprazole 30mg for 4 weeks made no difference
The only thing that has been suggested all the way though this is stress and anxiety ??? but why and how can it cause all this when i was fit and health before this all happened.
If you got this far thanks for reading any body had any of these symptoms ?
thanks
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Latha84
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Well they've certainly been taking your problems seriously as that is a crazy amount of tests and checks. After 30 years of chronic migraines I've had 1 MRI and that was after 20 odd years of having them, and that was it, no other tests.
Anxiety certainly can give you those variety of symptoms particularly chest pain, muscle pain, heightened senses. They obviously didn't think it was migraines or anxiety to start with or they wouldn't have bothered with all those tests, may be partly because you are male too.
Has anyone suggested fibromyalgia to you? Fibro has a depressing array of symptoms that include almost anything. I have fibro too. Symptoms include varied moving muscle pain, unrestorative sleep/insomnia, allodynia, hyperalgesia, IBS, migraines and more. You can end up with all of them one day and then none the next day. It varies hugely between days and between people.
Hi yeah the rheumatologist did but he has never seen me in person only a 20 mins appointment, then I asked the neurologist about this she did not think it was fibromyalgia.They’ve probably done all these tests as I ve been very persistent with the GPs to try and work out what is going on with me, as I was Dr goggling and it was bringing up a lot of worrying diseases.
I dont think they would do all these tests just bc you were insistent. My life has been obliterated by my conditions and I have been going to doctors for years. Plus I moved around a lot for the first 20 years of my life therefore saw more new doctors than normal. A lot of the tests you have had are expensive and are not recommended by NICE if they just suspect migraine and anxiety. This does not mean of course that you don't have migraine and anxiety but it is an indication they were looking for other causes initially.
A diagnosis of fibro and indeed migraine and anxiety are not things you can directly test for, they are just diagnosis brought about by the elimination of other causes. It is not surprising they are suggesting these if all your tests have come back clear. Also it is not unheard of for these conditions to start seemingly out of nowhere either unfortunately.
A lot of the tests at first were due to the fact that I work with raw sewage then it’s was a case of ruling out the like of the sinister stuff. So like you say it’s a rule of rule stuff out then you will come to a group of diseases it could be and migraines being a secondary pain
Ah yes I forgot you wrote that sorry, that certainly explains a lot of the tests. If I were you I would do some research about fibromyalgia and see if it chimes with your experiences.
Migraines can produce some bizarre side effects like paralysis and weird smells etc but it still sounds more like fibro to me. Of course they don't have any idea what fibro is and their understanding of migraine is poor too so it's easy to suggest these things in the absence of any telling data. Your description is not typical of fibro or migraine really but there are things in your list of symptoms that do occur in both and their symptoms overlap anyway.
So did you have these symptoms before you started taking the anti depressant? I did but sertraline did not help with or change the symptoms I was only on 50mg.
Well a lot of that sounds very familiar to me, had most of those symptoms starting when I was around 55. Had lots of tests, like you and ended up at neurology (the department where everyone with nothing diagnosable elsewhere ends up), where, as you say, they were primarily considering me a migraine patient because all the tests were negative,other than a diagnosis of osteo arthritis of the spine. I was offered amitryptaline and an epilepsy drug, but I turned those down. I'm afraid I never did get any kind of diagnosis, but I did then go and see a nutritional doctor who ran a couple of extra blood tests, put me on high dose Vitamin B complex for 3 months (B50 from Holland and Barratt) plus magnesium and calcium and vitamin D3 supplement. This helped with many of the symptoms, but I also used to visit a cranial osteopath about 3 times a year which helped with neck stiffness, headaches, dizziness and general arthritic pain.
15 years on and I still have periodic one sided headache, still have periodic dizziness and pulsatile tinnitus on one side only (seems my neck verterbrae are crumbling because of osteo arthritis which contributes), had one hemiplegic migraine, but I did get rid of the aura migraine I was having at least once daily - gave up dairy for another reason and never had an aura migraine again. I don't get the pins and needles very often, and leg twitches/body jerks or twitches are rare, but it's the magnesium/calcium that helps with that. I still take B50 for a week or so after a course of antibiotics, just to replace what's likely been lost because of them.
Sorry I can't be of more help, its pretty awful never having a diagnosis, isn't it...
Hi yeah it’s hard not know what’s going on with your body, when you just want to get on with life. My symptoms seem to change all the time so I think the doctors must think am making them up ha. I was not feeling to bad today so went out for a bike ride but now I feel lightheaded/ off balance abit 🤦♂️
Hi I take sumatriptan which does get rid of the pain from the migraines. I went to see a neurologist on the NHS so I don’t think she was a migraines specialist, she is going to put me on a couple of tablets to help with nausea and one to take every day to prevent the migraines.
Do you know what specific blood tests were done? I ask as I had similar lists with my thyroid and then again B12 deficient. I was treated, but not ever referred to an endocrinologist and find out many years later it’s Hashimoto’s which is autoimmune and if you have one autoimmune condition it would suggest you could have others. I am sorry to hear you are having to experience all this discomfort and the distress that comes with it. I know I have spent a good part of my life looking for answers and cures. I now look for management techniques. I also discovered as I have had to do a pain diary for Botox the doing the diary showed me how bad it was because I was always had to focused on the negative. So now I won’t do a pain diary I choose to focus on what I can do and what is good in the day rather than being sucked into that void of the negative. That’s not to say that when I get into day 4 of a real bad migraine cycle that I don’t feel complete hopelessness and despair ,because actually I do. I really hope you get some answers and some guidance. I would like to ask what the symptoms are that impact the most severely on your ability to function ? I am sure there will be lots of advice on how to manage, accept, or treat if you could be specific about the most disabling ones.
Hi I ve had my thyroid tested so many times GPs, hospital and syncope clinic.I done my b12 myself but it was from a online finger pick sample so don’t know how accurate they are but i also had this done when I went to see neurologist but have not had any results back yet.
My main symptoms are light/fuzzy heads,migraines, fatigue and just aches and pains.
I had a whole range of symptons such as light headness, nausea every morning, dry mouth, palpitations, every single day! Researching on Dr Google scared the living daylights of out me! Went to the GP and they believed it to be anxiety (co-incidentally I was stressed out at that time).
Finally was put on 'propanolol' to deal with my palpitations and then started having aching arms. Another GP put me on a high dose of vit. D and honestly, 90% of my systems went away.
I don't know if this will help you but since you have done so many test, its good to see where basics such as your vitamin levels are. Please check vit. D, folate, ferritin, and B12.
I am not sure if this helps but I feel that you need to ensure these are within range. Good luck, really hope you feel better soon!
Hi thanks for the reply,yeah my mind has been all over the place thinking the worst things and Dr google does not help sometimes, funny you say that I had my bloods done for b12 and folate my b12 was fine but my folate was low. So going to start to take folic acid supplement to see if that help my symptoms and I am going to ask for a b12 active test to get a true reading of my b12.
There is quite a lot of research into "mystery illnesses" at the moment. Also polyvagal theory and the powerful connections between mind and body. Gabor Mate's book 'When the Body Says No' is quite useful. Drawing on deep scientific research, he writes about the mind-body link and the role that stress and our emotional make-up play in common diseases. This is not the same as saying the illnesses don't exist or as rubbishing them in some way. Research is showing more and more that it is impossible to separate the body from the mind. One more thing - just a point of info. I was taking migraine medication but my migraines increased. Take it for too long and it creates headaches. Think there is a warning on the inlay about this. Hope you find some answers. Don't give up. Everything changes over time. Treat yourself well - the usual- good food exercise sleep walk in the fresh air. Rest when you need to. I wish you well.
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