Helping my friend with ME/CFS

Brain and nerves
1

Hello everyone,

Hope you are all having a nice day.

My friend whom I've know for about 3 years suffers from ME/CFS. He has had it for 23 years since he was 16 and it seems there hasn't really been any remision period, he does say the last five years have been easier for him although he still has very difficult days very often, I cannot possibly imagine how it was for him before.

I am determined to finding a way to relieve his symptoms so he can live a happier life. I think he has missed out on so many things in life due to his condition, being mostly bedridden for years on end. I think his case is quite severe.

He says doctors haven't been too helpful throughout the years, so what I am looking for is making a plan to improvement.

Overall his symptoms are those of ME/CFS. Extreme exhaustation, brain fog, achy body, etc. He almost never has any energy to go outside his house. He also has low vitamin D levels and digestive issues, he actually says he feels a strange lump in his belly. He says his symptoms started when he was 16 as a flu, shortly after a visit to the USA.

I am open to the possibility that this might not be ME, but some other disease. Lyme disease has been suggested.

So I'm thinking he can go back to a doctor and get several tests done, probably some that show some sort of immune system imbalance, rather than some vitamins and stuff. I think this would also help him get the attention of doctors back again. I feel like he was brushed off by doctors back when he started having his symptoms as they couldn't find anything wrong with him.

I recently recommended to him drinking chlorophyll and taking magnesium pills. It's only been a few days since he started taking the chlorophyll but it seems he is reacting bad to it

I don't know of any other natural remedies that have worked for you guys?

Could things like meditation and yoga also help?

What oher things could you guys recommend for my friend?

Thanks in advance!

2

Hi, I sympathise with you firend as I too started when I was young (now think about 12 but not after a recognised illness). I have been medically listed as have M.E. , Fibromyalgia and Functional Movement Disorder within the last 6 years. My mother told me I had a bad back like her so I was not tested up until it went down hill dramatically 6 years ago although looking back I've had a lot of other symptoms which should of always been questioned.

​You're a kind friend trying to help him. I have a few really good friends but I don't think they would think to research on my behalf.

​My Vitamin D count was lower than only 1 other person my doctor had ever tested. It should be 50 but mine was 18. I had a strong Vit D course for 6 wks and now forever i will need to take double the dose recommended to others. It has now taken me to 70+, taking away a lot of my neck stiffness and cracking noise.

​I take Magnesium and Vitamin B complex which have given me more energy during the day.  It is noticeably different as I don't often need to sleep during the day but it hasn't given me loads of new energy.

​I do have a life although I have severe M.E. I have a brilliant doctor! I asked the surgery if they have a doctor who has specialised in conditions like Fibromyalgia (as I'd only been diagnosed with that then). That doctor is so patient and caring, booking me in every 4 wks to monitor how the symtoms are and my reaction to meds.  After about 5 years I now take 24 tablets a day (13 different meds) we have me stable and coping as best as it will let me.  I am self employed and do lots of DIY. However, I am constantly in pain, wearing a magnetic back support all day and I have a vibrating (massage) car seat. I have a mobility scooter, 2 walking sticks and can't travel further than 50mins in one go without resting for days. 

I push myself constantly, definitely too much but I do have a life with a a very caring, supportive family and friends! 

Good luck to your friend x

3

Hi I have CFS/ME been ill for yrs but diagnosed in 2015. I have B12 and vitamin D deficiency. Go on these FB groups, their saying when you get your vitamin D levels up high it sorts the bad bacteria out in your stomach. I cant explain it very well so check these groups out they might help you.

4

The lump in his belly wasn't diagnosed?  The first thing I would do is convince him to get a second opinion.  

Second, yes to meditation and yoga.  However, if he is as tired as you say, even tthe yoga may be too much.  Also, sometimes it is difficult to relax enough to slip into a meditative state.  I used to be able to do that, but am finding it more and more--in fact, almost impossible--to do.  The addition of post-mastectomy nerve pain to the ME/CFS has done me in.  That's why I haven't been to this site very often over the last few months.  I am not confined to bed, but there are days, lots of them, when the recliner is my best friend.  :-)

But as for  you--that belly lump he feels needs to be identified.

5

You should have him get checked for a condition I recently got diagnosed with. I've had Chronic Fatigue for the past 25 years with the same problems as your friend. Then about a year ago after having a seemingly different procedure for Vericocele Veins, a doctor discovered I had May-Thurner Syndrome (Left Iliac Vein Compression). After I had a stent placed for this condition almost overnight I was "cured" of Chronic Fatigue Syndrome. The next day brain fog was gone. Within a couple days every ache and pain in my body was gone and the fatigue was fading away. It was a miracle!

It turns out I'm not the only one getting cured of Chronic Fatigue. There's actually a very similar vein compression condition called Nutcracker Syndrome (Left Renal Vein Compression) that has been a known cause of Chronic Fatigue Syndrome and every symptom of CFS for over 10 years. These 2 conditions frequently occur together due to the shape of the spine pressing into these veins. Where is the lump located? If it's around the lower left area of his belly button this could be a good clue of this condition as well. If he does have this condition, it's possible he could get almost complete relief from his symptoms from a simple stenting procedure.

6

Has your friend found anything that has helped him get better? As I suffer from the same symptoms.