Can I ask some advice please?

[Chris_3792]

Hi guys, hope everyone is well.

For the last couple of years I've had sleep problems - sometimes struggling to get to sleep but mostly interrupted sleep. It's very rare I can sleep for more than 4 hours at a time before waking up and I have been sensitive to light as well. Didn't really think anything of the sleep issue as I just thought it was shift patterns disrupting sleep.

In November, I had a sore throat and cold like symptoms which led to tonsillitis that did not clear off its own accord for 3 weeks. During the illness, I've felt a lot more tired and fatigued than normal even with sleeping and when I have been really tired, I have been suffering from severe headaches that do not respond to over the counter medication, only sleep. I have never been the best cognitively or co-ordination wise but when tired, this seems to get worse.

I spoke to my GP about the issue and after a course of Benoxymethylpenacillin and 2 courses of Clarithromycin, this seems to have resolved. However, I have still been suffering with fatigue and now additionally, muscle pains all over after exertion and palpitations at rest. Recently, I had a day where I couldn't physically do anything because I was so exhausted and fatigued I did not feel able to do anything. I woke up exhausted and remained that way all day, so I went back to my GP.

Blood test results showed a Vitamin D3 deficiency (exact cause unknown) and I have recently started a course of 25000u of Invita D3 - twice a week for 6 weeks.

I was just wondering if anyone had experienced anything similar Vitamin D wise and whether that was the root cause or if symptoms had eased after this therapy. If symptoms have eased, how long did it take after Vitamin D therapy. If not, what happened afterwards to get CFS / ME or Fibromyalgia investigated or diagnosed?

Thanks for any advice that can be offered.

Chris.

 

[dejurgen]

I was just wondering if anyone had experienced anything similar Vitamin D wise and whether that was the root cause or if symptoms had eased after this therapy.

Hi Chris,
My health declined over many years until about 5 years I got into the stage I had CFS. Later it turned to the stage of ME, "thanks" to GET/CBT (ME as in CFS didn't start to describe the seriousness of the disease any longer).

At the beginning of this CFS stage my doctor decided to check vitamin D in a blood test. I don't know what type of vitamin D it was exactly. When results came in at 5.5 European units, my doctor in a blink changed his attitude towards how serious the situation was. Minimum levels should be 20 and are even considered low among many doctors. He considered all below 15 to 16 as a clear indication for winter fatigue. I had 5.5...

Judging at his reaction I think he had rarely or never seen such low values. I do take Colecalciferol (vitamin D3) 25000 I.E. once a week. The effect: vitamin D levels slowly build up to about 40 units now, but it does not seem to help with my symptoms.

Diagnosis of ME/FM is very dependent from country to country. Be very wary if anybody suggests CBT/GET when diagnosed. It has been known to be able to make patients far more ill then they already were, but "research/lobbying" suggested it was effective. New research and guidelines are no longer supporting it so you can better defend against this form of torture. To be fair, it does help some a bit but it destroys far more other patients.

 

[Chris_3792]

Hi Dejurgen, thanks for your reply.

I have no idea what my levels were. I received a phone call from my GP saying there was a Vitamin D deficiency and the prescription was written out for me. I have no idea or indication as of yet if the GP wants a reassessment after the course of medication.

I imagined they were really low due to the doseage of 25000u per ampoule - and taking 50000u a week. Over in the UK, we use something called NICE guidelines which states symptoms have to last at least 4 months with no other obvious causes or indicators. When this course ends it will be very close to the 4 month stage from the initial illness that triggered a lot of these symptoms. Should it be ineffective.

My main concern is my job. It involves 12 hour shifts, days and nights and includes carrying 20 - 30kg of equipment and potentially patients. I'm not sure how going back to work will impact on the fatigue issues experienced .

 

[Chris_3792]

I recently visited my GP again who told me my Vitamin D levels were 15. They should be between 35 - 50 apparently. I am half way through my course of medication and I don't feel like it's helping with my issues.

I'm still experiencing post exertion fatigue which doesn't resolve with what little or interrupted sleep I get. In addition there's days where I feel in agony with my arms and legs and end up plastering myself in deep heat to help. I also experience frequent migraines which I take Paracetamol and Codeine for.

I haven't been able to work throughout December. The day before I'd planned to go back and give it a try, I did some shopping, packed and drove 50 miles from my family to where I live. During the night, I had very little sleep and woke up so drained of energy it felt like so much effort to get kitted up in my uniform. I was sent home from work and spent the rest of the day in bed feeling physically incapable of doing much more. Has anyone experienced anything similar to this?

Thanks

Chris

 

[dejurgen]

Has anyone experienced anything similar to this?

Yes, and much worse. *IF* this is indeed ME/CFS or going to it (and your story sounds familiar for gradual onset cases such as I have) then PACING (not that very controversial PACE trial thing with CBT/GET that got so many of us so much worse! They managed to make such ridiculous research that several Noble medical science prize winners and the biggest statistical organisation in the world openly reacted to it.) and lots and lots of resting while only very slowly building up activity when feeling better will probably be essential and something you very much wished you've done within a year or two if you won't do it now.

The best of luck. If it is ME/CFS you're getting into, then you are in the best phase to have a fighting chance: the beginning of the disease. *IF* it is hidding towards a bad case of ME/CFS then having a full time job unfortunately is not your first priority. I don't make a diagnosis on your health status!

 

[Chris_3792]

Hi, thanks for your advice.

What is PACING please?

Until I finish my course of medication at the end of the month, there's nothing else I can really do in terms of GP visits. It's a waiting game until February really. It's just frustrating with work because I'm on a 30 month training programme and I'm being pressured for time.

I'll keep you posted on what happens. Since Friday where I felt physically incapable of doing anything, I have since managed to drive home, but still feel so drained of energy and my legs feel like lead weights.

Thanks

Chris

 

[dejurgen]

Hi Chris,

I'll use words from others who can explain it better then I can:

From https://www.york-me-community.org/pacing-the-chronically-ill-persons-best-friend-2/

"Pacing refers to spacing out your activities during the day so that you’re able to stay within the limits of what your body can handle without exacerbating your symptoms. Another way to think of it is that pacing is a way to keep you inside your “energy envelope”—the envelope that contains your energy stores for any given day."

The linked article is short and contains some nice extra information.

Form me, pacing is about learning to do no more a day then I am "allowed" to do without getting worse. It means doing no too long nor too intense activities preferable ever, doing few activities a day and resting sufficiently between them.

Cort has a link to plenty of resources concerning pacing https://www.healthrising.org/forums/resources/categories/pacing-exercise-and-management.168/. He probably has worded it somewhere very nicely too but the first link was easy to find and worded very well.

 

[Chris_3792]

Hi, thanks for your reply.

Without trying to sound disrespectful then, it's almost like trial and error to find your limits and how to best optimize physical activity without making symptoms worse.

I've been keeping a record of my symptoms and what's been happening since it all started in October / November time. Would that help with future appointments and a potential diagnosis should these symptoms persist or worsen IF this is what it's progressing towards?

 

[Zapped]

There’s a Brazilian doctor who got a lot of publicity re using mega doses of D3 for MS and related illnesses, Dr Coimbro?
I tried 150,000iu daily for 3 months after reading of his successes. In all candor I could not discern any affect but I still take ~100,000iu 3-4 times a week - per his ‘expert’ recommendations. Try Google for reports and his website. Good luck.

 

[Zapped]

... it's almost like trial and error to find your limits and how to best optimize physical activity without making symptoms worse.

I've been keeping a record of my symptoms and what's been happening since it all started in October / November time. Would that help with future appointments and a potential diagnosis should these symptoms persist or worsen IF this is what it's progressing towards?

IMO, Journal is a good idea. I did for 10 years before needing to show the record (for more rxs). Your observations sound accurate - ‘slow vs. go.

 

[Chris_3792]

Hi Zapped, thanks for your information and advice.

I revisited my GP due to my relapse and intensification of symptoms about 12 hours after exertion. He's signed me off work sick again until I finish my current treatment of 25000u twice a week.

He's also advised that I do try and gently exercise and exert myself occasionally to try and build up stamina. Obviously he's still treating it as the Vitamin D deficiency as the cause until I can be reassessed in February should i get to that stage.

I was under the impression that if it was deficiency related, the symptoms would be consistent and improve during the course of medication?

 

[Zapped]

@Chris_3792 I just checked - Dr Coimbra - impressive credentials. See overview of his protocol (from Google) and his opinion that
USA’s RDA is ‘paltry’ and that 25,000iu daily is okay for any adult. His therapy is 40k - 200k iu daily (for MS and immune related illness. There’s also a page re Coimbra’s success on Facebook. ‘Hope this helps your efforts=)

 

[Chris_3792]

I haven't been diagnosed with anything yet other than the Vitamin D deficiency. My GP won't consider any other alternative until that course of medication rules that out as a problem. I've only had symptoms for 2 months so far. But at present my medication doesn't seem to be working as of yet. I'm half way through the course.

My GP at the minute advised me not to take anymore than 25000u at present. But will check out his stuff in case it does get to a worse stage.

 

[Chris_3792]

Just to update everyone on what is happening:

I have now finished my course of Vitamin D medication. A blood test showed I am no longer deficient at 81. I have explained to my GP that I do not feel like my symptoms are improving. When I do exert myself, I find I have been capable of doing less than what I would normally expect and my symptoms continue to follow this pattern of worsening between 12 - 24 hours after exertion.

My GP wants to give it more time to see if I improve gradually over time. He has not given any other diagnosis, prognosis or timeframe. However, since my appointment, I have had what feels like a phase where I have just felt extremely tired and drained of energy. I am due a telephone consultation with occupational health that work have arranged for me and I have been actively encouraged by my workplace to assert some kind of pressure to find answers off my GP as to what's going on. My workplace will not allow me to return to work under amended duties. I will go back to see my GP after my occupational health appointment and see what he says based on this latest relapse of symptoms.

Thanks for all your support guys