ME/CFS? Am at the end of my tether.

[CuppaTeaAndAJammieDodger]

I have been back and forward to my GP for 2 years now with different things wrong; blood tests have come back inconclusive, scans have shown nothing and now I'm back with more strange things going on (more bloods to be taken tomorrow).

I am absolutely sick of feeling like shit and loathe going back to the doc with yet another thing wrong with me (I find myself apologising to her each time I go in) and find myself avoiding it until things get really bad.

I had a bit of a lightbulb moment the other night and wondered if I had ME/CFS. Of course nobody wants this but it really would be good to get some sort of diagnosis.

I was hoping/wondering if any of you could read my (extensive!) list of symptoms and let me know if you think it's plausible?:

• Persistent headaches that are not typical migraines (although do suffer from them as well occasionally which are treated with beta blockers) mainly behind the eyes and back of head – have been experiencing this for over a year
• Symptoms of IBS – chronic diarrhea, bloating – have been experiencing at the current level for approximately 6 months but has been there for a couple of years
• Noticeable deficit in short term memory, ability to focus/concentrate for the past 18 months or so
• Constant tinnitus in left ear for 2 years (MRI shows no abnormality)
• Regular heart palpitations (have been checked for heart problems and been given all clear)
• Recently started muscle twitches all over body, always there to greater or lesser extent
• Recently started unexplained pains all over body (come and go quickly – often within a couple of minutes)
• Recently started experiencing severe fatigue in arms – feel like two lead weights (one arm is often better than the other – but they swap)
• Unbelievable fatigue that can be there when I wake up or hits me out of the blue during the day –I could be fine and then could be literally crumple on to the floor within seconds, this isn’t every day but very regularly (I’d say the percentage of affected days is currently about 70%) – have been experiencing this for at least a year
• Get unwell (sore throats/flu/infections) more often than usual
• Occasional unexplained nausea/vomiting
• Anxiety and panic attacks (have managed to reduce the panic attacks with mindfulness)
• Get very cold very easily – e.g. husband and daughter can put on a jumper to counter the cold when I have to put on 5 layers and still feel the cold.
• Go through phases of insomnia and wanting to sleep all the time
• Very recently noticed a heightened sense of smell (N.B. I recently had a brain MRI that came back normal)

Thanks tonnes for getting this far!

Thanks for the posts - sorry for such a late reply, it has been a hectic couple of days which has completely knocked me out. So my Thyroid and Calcium blood test came back normal - which is disappointing (I love the way the GP's receptionist says it in a really positive way when all I'm thinking is "I just want a diagnosis!").

We're actually off on our postposed honeymoon tomorrow (bad timing really but been looking forward to it for a year!) so I'm going to do some reading up over the next couple of weeks, and make another appt as soon as I get back from that and ask for additional blood tests to check for vitamin issues and poss. lyme disease.

Ask for bloods:

Full Blood count

Iron stores (ferritin)

B12 & Folate

Vitamin D and,

Testing for Coeliac disease.

Good luck

Never believe anyone who tells you your test results are ‘normal’. This often just means that they have come back within the reference range. Get a print out (you’re fully entitled) and post your test results with the reference ranges, either here or on a forum like Thyroid UK at www.healthunlocked.com.

Your TSH needs to be around 1 and both FT4 and FT3 in the top half of the reference range to be optimal.

OhMyWord is spot on with the other tests you need.

Thankyou so much for the guidance - I'll get a copy of the results and post here once back from honeymoon. It seems I have
a long road ahead of me to find out what's going on.

I heard a radio station callet saying she's had terrible symptoms which turned out to be vitamin d deficiency. On Tuesday ,9 pm, LBC have a medical phone in... The doctors seem very knowledgeable. Lupus is another tricky illness to diagnose. Good luck.

Yup. The ranges used in the uk are much broader than many other countries- get the actual results. Also make sure you had a full thyroid panel done, not just TSH! You need free t3/4 and antibodies as well. Check iron (ferritin) b12, vitD (25OH) blood sugars and Hba1c (a measure of blood sugar control over time.) might be worth getting some inflammatory markers like CRP and ESR done too.

Get out in the sun for fifteen mins a day - don't burn, if you're pale do it before 11/after 3, but get the sun on your arms and face for just 10-15 mins.

Also make sure you have a full blood count. I'd also do a faecal occult blood screen too, to rule out anything like a bleed in the digestive tract/polyp/tumor

One last thing - how are your periods?

Googled vit d deficiency and could be that

scroll down about halfway for symptom list

www.openmedicinefoundation.org/2016/07/06/metabolomic-and-chronic-fatigue-syndrome-robert-naviaux-md/