Diagnosed with CFS, is there any where to go ?

Background:

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.

Trigger:

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.)

Symptoms:

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.

Avenues explored:

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.

The positive:

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.

The Future:

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 ?

11 Replies

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  • Hi digga2

    Got to start of by saying I'm a bit foggy today (no change there then) so may have misread or misunderstood some of your post as you have mentioned quite a lot of detail. Good in order to get a background, but difficult for an ME patient to take in without going over it again and again.

    Secondly I must clarify that I am not medically qualified in anyway but an ME patient myself who has done a lot of research over the past six years. Mine was triggered nearly 30 years ago after a bad bout of bedridden flu and a gut infection (gut issues very common in ME). Slow decline over a few decades, forever backwards and forwards to GP saying this isn't right but no one seemed to understand, many barely even listened. Even had one GP say, and I quote, "some people are just susceptible to viruses, you'll just have to learn to live with it"! What?!!! Needless to say never seen him again! Anyway 6 years ago had what I now know to be a massive ME crash at work and not been able to work since. Now had several more crashes leaving me 95% housebound, often bedbound and my condition is getting worse not better despite finally getting a diagnosis. Sound familiar?

    Clearly as you say something is wrong, what you describe is not normal. Is it ME though? Could be by the sounds of it but as I'm sure you are well aware by now ME and CFS have similarities with many other conditions and as a consequence the world of such conditions is littered with misdiagnosis.

    Rather than at this stage go over your individual points my first suggestion would be to advise you to try completing this test to see if you have ME. It's the ICC criteria for ME (that's the International Concensus Criteria). meadvocacy.org/the_internat... . If you can get to the end of it then yes ME is a possibility, but still not guaranteed.

    Next I would say please don't believe what some will tell you about ME and CFS being the same thing. They are not. A good website to look at for more information on ME and the difference between ME and CFS is the Hummingbird Foundation hfme.org/ .

    Also bear in mind that chronic fatigue is a symptom that can occur with many illnesses including thyroid issues, Lupus, recovery from cancer, heart issues and even mental issues.

    CFS is a syndrome, a collection or set of signs and symptoms that characterise a particular condition. In other words it is a wastebasket diagnosis which generally means we have no idea what is wrong with you and can't be bothered to do all the required tests. Consequently most people who are diagnosed with specifically CFS are actually misdiagnosed and have something else, which may or may not be ME. hfme.org/misdiagnosis.htm

    There are many useful websites and facebook groups out there that offer advice and support and by all means look at them all. However, I would advise you to be cautious about any one of them that refers to ME and CFS as being the same thing. To this end I would include being cautious of Action for ME as they are notorious for not sufficiently backing the biomedical basis of ME and not sufficiently dismissing the totally erroneous premise that ME is a psychological condition. This is a very complicated issue with a long and quite political history which I wouldn't worry too much about at this stage. Suffice to say ME is not CFS and neither are psychologically caused (triggered possibly but definitely not caused).

    One problem you will find relating to the name of the condition(s) is that in the USA they mistakenly call ME and CFS as the same thing. As do the NHS and NICE in the UK. Very confusing.

    Don't want to bombard you with too much information so I'll leave it at that for now, but please feel free to ask as many questions as you have, in your quest for the truth about your health.

    Gentle hugs, Margaret. xxx 🤗🤗🤗

  • Me again.

    One important point I did mean to add is that for a diagnosis of ME then it is essential you have the symptom of PEM (post exertional malaise), also known as PENE (post exertional neuroimmune exhaustion) which refers to the fact that ME has been defined as a neurological condition by the World Health Organisation since 1969. PEM is often described as the cardinal symptom of ME.

    PEM is where even after minimal activity (which for the severely affected can be as little as sitting up in bed) within usually 24-48 hours, any or all of your symptoms can worsen. This may or may not include fatigue. In fact, contrary to popular belief, it is possible to have ME without fatigue. Also the delay in the onset of worsening symptoms is crucial, and it may sometimes take longer than 24-48 hours. If it usually happens straight away then that is not PEM. Additionally the worsening of symptoms can potentially go on for up to weeks afterwards.xx

  • Hi Digga

    Have you been tested for growth hormone deficiency or any other pituitary hormones that may be deficient.

    It took 15years to find out that I have 'Severe Adult Growth Hormone Deficiency' (after being given CFS diagnosis)caused by damage to the Pituitary Gland and can cause all the symptoms you mention.

    There is a condition called Sheehans Syndrome which usually happens to women in childbirth. It affects the Pituitary Gland and a number of hormones. Symptoms vary widely from mild to severe and can cause all the symptoms you mention.

    Usually the thyroid will start to become sluggish and this causes a lot of pain as does AGHD.

    You would need to see an Endocrinologist to have specific testing not just blood tests.

    I had the Glucagon Stimulation Test and the Insulin Tolerance Test and test came back 'severe Adult Growth Hormone Deficiency'.

    If you do have this Human growth hormone injections will help enormously.

    The Endocrinologist said that people who present with CFS symptoms are often suffering from some time of Pituitary disorder.

    I hope this helps because there is nothing worse that being fobbed off with a label of CFS.

  • What's so funny is I was growth hormone deficient as a child.

    I Was on daily injections of growth hormone from 4 till I was 16. I was re-tested at 16 and it showed I produced enough growth hormone to sustain.

    I did look up growth hormone deficiencies 6 months back.

    The symptoms included loss of muscle tone, increased body fat and sexual hormone issues. I brushed it off because i have quite lean muscle mass, loads of hair, slim and fathered 2 children over the last 3 years. One in thr middle of the CFS .

    But I mentioned it to the rheumayologyst 8 months ago and I kept asking the GP 8 weeks ago once i got the flare up again if i should be referred to an endochrinologyst for hormone and thyroid checks., they said no and did my bloods all again which were clean.

    I've been following drmyhills advise on CFS and have continued to improve. The main thing which helps 70% of my muscle pain is the glutamine l, d ribose and coq10. I'm now about 70% through level2, which is feeling fine most days as long without any exercise.

    How did you get referred and get these tests done? Did you have symptoms similar to me?

    I'm going to read up on what you just posted

    I could try to get them to refer me again and say I'll do it private. This is what i did with physio, rhumao and neuro as the nhs is so rediculously slow and i feel better educated on some of this stuff than the gp's.

  • Hi Digga

    The reason I answered your post was because your post is almost identical to everything I have had and done and how it started for me 15years ago.

    I have been a patient of Dr Myhill's since 2010.

    In 2015 she was the one that made the preliminary diagnosis of pituitary damage being related to head injury(2002) as she could not understand why I was not making any improvement on her protocol.

    I also have very poor mitochondrial function (I had the mito function test a good few years) and take a number of supplements like you.

    I then went to my GP after doing some research and ready an article in the Daily Mail about Chronic Fatigue and Head Injury and a condition called Hypopituitarism.

    This is the link to the article dailymail.co.uk/health/arti...

    I went to my GP and asked for a referral to an Endocrinologist and she thought it was a waste of time because she had never heard of pituitary damage being caused by head injury but because Dr Myhill had written to her about it and I had done research...I took the article from the Daily Mail with me. GP agreed for me to have an appointment.

    Any way I saw the Endo and I thought he was going to say nope. I was amazed when he said that people like you who have been diagnosed with CFS can actually have problems caused by head injuries which affect the Pituitary Gland.

    They tested my IGF1(Insulin Growth Factor) which usually shows abnormal result with Severe Growth Hormone Deficiency but mine was normal. But he still ordered the specific testing because he was sure it was related and sure enough I have Severe Growth Hormone Deficiency.

    Growth Hormone Deficiency can be isolated and all other hormones can fall with in range but you can feel absolutely awful and it steadily gets worse over a period of years.

    The fact that you had growth hormone deficiency as a child should be factored in to the equation because it the one hormone that can cause so many problems.

    I know what it's like to be fobbed off so many times and even verbally abused by doctors over the years that you lose heart and end up staying away from them. That why it took so long for me to get a diagnosis by then I had lost everything. Job, home, career, ability to get out the house, bedridden for months at a time. The CFS diagnosis is a clinical one based on Dr Myhill's tests and it is very severe. I am between 10-20 on the CFS disability scale).

    As regards the Adrenal Fatigue because the HPA axis is affected(Hypothalamic, Pituitary, Adrenals)...the adrenals try to compensate for the hormone imbalance and produce quite high amounts of Cortisol...this puts a lot of stress on the body.

    I have had high levels of Cortisol for years since the head injury and was misdiagnosed with Chronic Anxiety Disorder in the beginning because it ran none stop.

    12months ago I started taking Holy Basil after loads of research because my sleep pattern had been messed up for 15years. I jumped at the slightest noise(hypervigilence).

    I started taking the Holy basil and in less than a week I was sleeping 7hours !!!!! Halleluya!!! and as months have gone by the hypervigilence has calmed down.

    I did try the growth hormone treatment but for me there were complications with it which happens sometimes but I could not believe the difference in the muscle pain after only a few days...I had not been pain free in over 15years. I was gutted when I had to come off it.

    Anyway you can request to see any Endocrinologist and if they don't let make a private appointment with one as most of them work for the NHS anyway and tell them that you want the Glucagon Stimulation Test then you will need the Insulin Tolerance Test because to get the GH treatment you have to fail both tests.

    Look at the NICE Guidelines on Adult growth Hormone Treatment.

    Also there's a form that patients are asked to fill in called the AGHDA questionnaire

    here's the link nice.org.uk/guidance/ta64/d...

    Sorry it's a long post but according to my Endo who is Isolated Growth Hormone Deficiency is very common and goes undiagnosed a lot!

    If you don't get answers from your GP change to a bigger practice with lots of funding because the treatment is expensive and small practices won't always fund it but that's a whole other issue.

  • Interesting you mention sleep as i have had disturbed sleep since i became an adult. I wake up from the slightest noise and often feel very alert. With the ashwagdha, meditation and sleeping with ear plugs I've improved this dramatically. I always envied people who don't wake 3-10 times a night.

    I also think this has been getting worse over the years. My snowboarding energy seemed to decrease every year. I always had this thigh pain when snowboarding for the last 6 years, but i presumed everyone got it, but a few years ago i asked around and it was only me that had such a bad early onset. They felt tired after about 3 days not 3 hours.

    I've just emailed my neuro asking for a referal to an endo, as it will be much easier than asking my gp again after only 6 weeks. Then I'll try the gp once more. I just need for them to agree so i can get it covered under the insurance.

    I remember the GH being really expensive as a child and was very thankful to the nhs in this regard. Even if i had to pay for this stuff I'd rather that than living like this.

    Don't suppose yours works around london? if so PM me.

    Sad to hear you are stil suffering and you couldn't continue with the growth hormone. What are you doing about the chronic muscle pain?

    Thanks for your feedback

  • Hi Digga

    I am in Lancashire! So don't know about London Endos.

    I googled Pituitary Specialists in my area and picked one at a hospital in Lancashire but not my nearest hospital and asked to see him specifically and saw him within 6weeks and testing done within 1month of appointment.

    I am glad you have emailed your Neuro. There should be no reason for him to refuse you a referral.

    The treatment for Adult patients is free but first the patient is put on a trial of HGH for about 9months under the NHS Consultant Endocrinologist then it is done on a Shared Care Protocol with the GP who then agrees to take over the prescribing and monitoring of the HGH along with advice from Endocrinologist.

    As far as the chronic muscle pain goes I have been taking Branch Chain Amino Acids(used by body builders to help muscle repair). After doing quite a lot of research I started taking them about 9months ago and I also take the magnesium and I have magnesium oil. I also take daily B12 injections which I source privately.

    There has been some improvement but I have been very limited in my ability to walk and have to use a wheelchair if I go out because of the muscle weakness as well. My legs feel as though they have done 10K just from walking 10metres!! But i have gone undiagnosed for over 15years so it;s been a steady decline.

    I just hope that you get the proper testing and you get the answers.

    One thing to tell them that if they tell you that your IGF1 blood test is normal. A Diet high in protein will raise IGF1 to within normal limits even if you are GH deficient so it is not a good indicator.

    A good Endo will do the dynamic testing(Glucagon Stimulation Test and Insulin Tolerance Test).

    I wrote a long list of symptoms for the Endo and wrote a letter to him and gave it him to read at first appointment instead of talking to him because they like reading stuff!!! and also I don't have the energy to talk for too long before I lose the thread of the conversation so this helped a lot.

    Good Luck and I will be keeping my fingers crossed that you get the tests.

  • Oh and forgot to mention I have been taking Holy Basil for 12months which has dramatically improved my sleep and reduced the hypergilence caused by high cortisol...but not high enough to be out of concern to Endo!!

  • Few questions.

    1.)Where are you getting your holy basil?;if you havr noticed a difference I'd like to try your brand.

    2.)How much day to day pain has been reduced with the BCAA's and magnesium?

    Can you recommend a spray, do you spray it on your lega directly?

    3.) If you don't mind me asking, why couldn't you continue with GH treatment if that was the cause?

    4.) Did you meet all the AGHD symptoms or just several like me?

  • Hi Digga

    I buy Swansons Holy Basil from Healthmonthy.co.uk(online).

    Pain reduced by 50% but also not walking around as much so that may also be helping. I have noticed a reduction at night though because it was bad trying to get to sleep.

    I apply magnesium oil to legs directly using this brand....

    amazon.co.uk/Better-You-Mag...

    The BCAA's I think made a lot of difference. Even though the pain has reduced it has not disappeared altogether but definitely decreased.

    I have been GH deficient for so long that I meet all the symptoms but I did not have all the symptoms until probably 5years in.

    I am an older patient(60) head injury at 45. Diagnosis took too long((2015). Side effects a lot more common in people who have been deficient for a very long time.

    I had a number of side effects which did not bother me so much but then I got a rare side effect...severe upper abdominal pain.

    I tried reducing the dose but no luck. The only way that the pain went away was if I stopped the treatment.

    I was gutted! Because I knew that this treatment was working as my muscles were feeling so much better and my friends kept saying wow your eyes are open!!!

  • Update to any one who is following.

    Saw an endocrinologist, he stated if I have already had the full insulin test 17 years ago, he has never seen it EVER change. We reviewed my GH levels from this previous test, the doctor said he wouldn't suggest another test because the test results were so good.

    In the meantime I have been working on my "sleep" and gut issues. There's some more info in the "exhausted" thread, which got a bit hijacked, regarding the gut issues.

    I haven't slept through the night in 10 years and I am trying to address that. Other than meditation, night routines I have recently adopted wearing the "orange" tinted glasses 3 hours before bed.

    I am just about to start a sleep restriction regime. Which may be tough. Seems I am sleeping around 6 hours per night (9 hours in bed). Going to try and sleep at 11 and get up at 05:00. Then start backing the times our either side by 15 minutes, ensuring I still sleep.

    Muscle pains have reduced dramatically after increasing my magnesium. I have started taking at least 3 grams of Sarahs Magic minerals per day , 2* magnesium citrate pills at night and about 10 sprays orally per day. So I believe this could be due to all the toxins/lack of magnesium from my cleansing.

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