End of 2016, son was born prematurely. Many days and nights in the hospital.
Beginning of 2016, energy levels are reduced, yearly snowboarding trip yielded that I was completely worn out. Muscle pains in my legs were unbareable, severely bad fatigue. Ended up riding one or two days out of the 7, the rest of the time was spent in bed. Presumed exhaustion.
Summer of 2016, picked up the "flu" and was bed bound for 2 weeks. (This seems to be a yearly occurrence for me over the last 10 years. I will annually/ bi annually get very worn out and end up with flu symptoms, 2 weeks bed rest and things start to ease and eventually go back to normal.)
But this time I had very sore leg muscles accompanied with the flu. Similar feeling to DOMS, except it never went away. I felt this mainly in my quadriceps, but from time to time my hamstrings and calves. In combination with this I would have "RLS". My legs would need to be moved constantly, night times were the worst and I have this uncontrollable urge to keep moving. Things would ease with some stretching, but it never went away.
Months past and I was still feeling very fatigued, very low energy, was still continuing with work, but was often exhausted. Muscle pains persisted.
for 3+ months I was unable to stand for more than a few minutes, pains in my shoulders started appearing as a dull ache, from simple activities as watching something on my phone. Struggling to remember basic words, names, places on occassion, but didn't pick up on it. My brain was still in a good state, I could perform parallel activities and calculations and decisions without issue, but I tired easily.
Several visits to the doctors and wasted time, I decided to go private and got referred to a rheumatologist. EMG peformed and "apparently" concluded muscle wastage in shoulders and neurological issues in my legs. Suggested I may have a muscle disease. After many sleepless nights of said news I was referred to a neurologist. (5 months post virul)
In the meantime lots of bloods done, nhs and privately. All yielding nothing, except an elevated CPK? (marker for muscle inflamation and slightly low vitd, which later moved in to "normal" without much adjustment.
Neurologist stated previous EMG results were infact borderline at worst, booked me in with his guys to do an MRI and EMG. In the meantime My symptoms started to ease and I started walking 5 minutes a day and over the months I was managing to walk 30+ minutes per day.
EMG and MRI were both clear, good news.
Decided to book a holiday in the sun, as a diagnosis was not much clearer.
Started a diet of salad and meat, mainly fresh grilled fish. Lots of time in the sun.
Came back after a week and started to feel atleast 50% better, muscle pains were getting better and the RLS had basically disappeared.
Back to the neurologist who said we could perform a muscle biopsy to confirm there was no disease, but since all findings suggested this was highly unlikely and my symptoms were clearing up, stated to continue my pacing exercise and review in 3+ months.
This was March, I was feeling better. I was still tired, legs ached, but felt my walks in the country each day were helping.
Another holiday booked, feeling a lot better again.
Wish I was told at the start to take some time off and get some sun, but I digress.
March-> June starting to get better.
June, started noticing muscles pains were increasing, fatigue is now getting worse, rather than better.
July, bam, bed bound. Feel terrible, just like I got the flu again, likely that I did.
Same symptoms as before, except I often felt "foggy" like a dizzy feeling and found sleeping very,very difficult. I could sleep for hours during the day.
This time I needed to spend 8 weeks in bed, I felt terrible.
I had enough by this point and started doing my own research while I was in bed and this was what I started.
At the time my stomach was not great, I'd be frequently urinating and also was going to the toilet 3-4 times a day.
What I discovered help me:
I stopped all lactose, as I always felt I struggled a bit with this. I had stopped milk for a while, but I ensured I NEVER had anything containing dairy.
Stopped all gluten. I usually ate 8+ slices of bread per day. I stripped all gluten out completely.
I took out fruit nearly completely, I always struggled when eating a large amount of fruits, so I Thought i'd get rid of this too. I now have one piece a day.
I didn't ever take many stiumlants (caffine) but i ensured i didn't have any.
I stopped all processed foods and all sugary foods. I never had much to begin with, but I had the odd biscuit, bit of cake a few times a week. That is completly stripped out.
I started a diet of freshly cooked plain meals, high in vegetables, meat, nuts and complex protein. - sweet potato, brown rice, quinoa, eggs, etc etc.
I found I was always hungry and ate about 5 times a day. I still do
Getting 30+ minutes of sun. If it was sunny outside, i'd force myself outside to sit in a chair.
Supplements: I started taking strong multivitamins twice a day (myprotein.co.uk) - later reduced this to one every 2/3 days as symptoms eased.
Later: omega 3 fish oil, D-Ribose 3 times a day (although I have stopped this recently, as I don't feel I need it).
Coq10, one tablet per day for 6 weeks, I have recently stopped taking this.
half dose of magnesium at night, or bath in epsom salts.
Herb wise: Either an echincea or Ashwangandha in the evening. At the beginning I took Ashwangandha for 4+ weeks and I defintely felt this helped aid with sleep.
I started doing meditation at least once a day, in the evening mainly before bed and this defintitely helped with sleep.
I improved my sleep habbits and ensured the last 30-60 minutes before bed containted no TV. Tried to improve how frequently I urinated as I would sometimes go 3-4 times at night. As I started to get better I didn't need to go as much, further down the line I started to hold urine in longer, as I often found I would go to the toilet as soon as I felt the need to, this meant I probably only had half a bladder. This has got the toilet time down to once a night (improved sleep). I am hoping to improve this as time goes on and I feel better.
I started feeling okay, I was out of bed, but struggling. (8 weeks post bed bound)
I started taking L glutamin twice a day and my leg pain seemed to almost disappear. As an experiment I haven't had any in 24 hours and I definitely notice it is startin to come back. I am going to stay off for another few days and see if gets much worse and then continue back on that supplement.
I now take a vitamin C supplement in powder form - 600% rda, I take the recommended amounts on the pack. Twice per day, it's one tiny scoop, which I think is 0.5gram.
Another weird thing I noticed is that after about 19:00, my muscle pains feel a lot better and I have a second boost of energy. It's very weird, but I read elsewhere that this is common in other suffers and I never could find out medically why this was.
I got back to work and I am stuggling terribly in the evenings, I am a zombie and just lie on the sofa. But I am at least back at work.
I have got back to doing about 10 minutes of walking per day. I am spending some time to do 15 minutes of meditation at work and I am trying to ensure I "relax" a bit more at work.
Any way, long story short, went back to the doctors and they are going to refer me to a CFS clinic.
What I want from the doctors:
I wanted some professional advice on if what I am doing is best, Ideally I wish someone told me all this stuff a year ago and I bet I would be in a better place.
For me, I don't know if this is just a post virul infection that will eventually get better, or if I will continue to go in this cycle. I have been in this state for more than a year, that is not normal
Are we missing something, for me it's strange to have really painful muscles in my legs like this and when I recall back in my memory. They believe we have checked all avenues, but I am still skeptic, but hope that with this new plan, things will get better over the years and I don't continue to relapse.
But what I do know is, nutrition and removing anything that maybe giving you an allergic reaction helped dramatically.
Combine this with stress reducing activities (meditation, acceping what is going on and pacing)
Light exercise, stretching (pilates, yoga) , later leading to small walks
Sports supplements (for muscle pain, the l-glutamin) is definitely helping me with my muscle pain and the extra VitC boost, has definitely increased my energy levels and well being.
I am young (33), reading in to others symptoms these seem to vary dramatically. Some individuals have been sufferring on a daily basis to the level I feel when I have completely crashed and bed bound. I.e not able to stand for long periods of time, sleep all day, just about manage to walk around the house.
I am a bit skeptic that the CFS clinics are going to help me, I will continue ahead with what I am doing in the hope that this will continue to get better.
Is this ME? Is there more that I can do to get better advise.
Is it worth going to these doctors that specialise in "adrenal fatigue" , take one of these tests and then get advise to take liquoric root to help with my coritsol levels?
Any words of wisdom ?