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Hi all any advice on what i should do next would be a great help as i am at a point where i'm not sure what i should do.
I am after some advice from people who have been through diagnosis with cfs/me as I am sure I have enough symptoms for this to be investigated further.
It all started in February this year, I was suffering with inner ear issues which spead to the eustachian tube and then to the sinuses. I was also suffering with severe left temple pain which would cause facial pain down the entire left of my face. (I was given antibiotics for sinusitis and carbamazipine for "trigeminal neuralgia"
During all of this I started to suffer with crippling fatigue with muscle aches and pains, muscle spasms, constant pins and needles in hands and feet, dizzyness, tinnitus, night sweats, constant headaches/migraines and "brain fog"
This continued until mind June when things started to ease off, i was able to return to work and pretty much carry on with a "normal" life. I was still suffering with muscle pain which was mainly in my left arm/shoulder and left leg. I was struggling to complete full days of work as my body/mind would start to shut down on me a few hours in to my shift and I was struggling through the resr of my day, I would get home and crash until the next morning and I would do it all over again.
By mid July I was feeling good at this point my main struggle was with shoulder/arm pain and left leg but was managable.
At the end of September I left work early one day as I had a horrible headache and my body was starting to ache all over. I got home and went straight to bed, 5 hours later I woke up and couldn't move. From head to toe everything ached. It was like I had the flu but I didn't. This lasted for 4 days solid then started to ease but I had been left with this crippling fatigue and muscle aches, pain and spasms, hot one minute cold the next, frezzing cold hands and feet and brain fog. This lasted for around 2 weeks then slowly started to ease so I returned to work but this time we ensured that i was working at a slower pace, working on one task at a time and taking a small rest break every now and then and getting other team members to take some of my workkload away from me which has been helping with the way I am feeling.
Now I am waking up in the morning with just the usual sleepy feel rather than waking like I haven't even been to sleep. My body is so much looser so I am able to move normally and not feeling so stiff and in pain when I try to move, I am getting home from work most days just feeling a little drained rather than feeling like I need to collapse in bed.
I am working so much on relaxing and spreading my work load and getting plenty of rest during the day and eveings and just taking it easy over the weekend to try to stop the whole thing starting again but I do worry that this is going to happen again and If this does I need something diagnosed and not just told there is nothing coming from tests so just to rest.
My DR has mentioned CBT but no diagnosis of cfs/me. I discussed the exercises I am doing at work am he says it is a good idea if this helps but I really need to know if cfs/me is what we are looking at as nothing is coming up from tests i have had done.
I need to start pushing my dr but not sure how to handle this, can I ask for a referral to a cfs/me specialist to see if they can diagnose me or do i need to be diagnosed before i can be referred? How could I handle this now so that I can get some diagnosis as I am worried work will not be so helpful for much longer without a diagnoses.
I have had all blood tests done which are all clear, I have had an ECG which was all clear and a neurological examination which shows there are no issues with my nerves. I did have a ct scan of my sinuses which does show blockages in my sinuses which I may need to have an op on but that is all that has shown up so far.
Thank you for taking the time to read my story, i have tried to keep it short but there is a lot of things to tell to get your advice. I need to keep pushing this even though things have eased now as if I leave it then this happens again it is like we start all the way back at the beggining again. (Sorry if I ramble a bit as my head is a little foggy today :-( )
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