Archive for April, 2009

Chronically Ill and Left Behind?

A friend has just gone back to work after 9 months of maternity leave only to be told on her first day back that they would like to make her redundant.  She’s been preparing herself to go back to work for months only she doesn’t seem to have a job to go back to.  Whilst a colleague in a different team has her boss making cakes for everyone to welcome her back from maternity leave my friend finds herself dropped in at the deep end.

emptyoffice-drumrick-flickr

image by drumrick on flickr

Whilst she’s been away the technologies she works with have moved on.  She feels disconnected and like everyone has moved on without her.  I know how I felt going back to work there after 3 months of sick leave and I got to do a gradual return to work with reduced responsibilities.  But it did make me realise how strange it would be to return to an office work environment.  The circumstances would be different and I’d be starting afresh but it would still be a major adjustment.  Well, not a problem because I don’t want to return to the kind of working situation I used to be in before illness robbed me of working.

Anyway – I’m digressing.  My friend has to complete a skills audit profile for HR to see if they can reassign her to another role.  Also she needs to get that CV up to date.  She asked, and I offered, to help her out with these.

What was an advantage was I haven’t done a job since I worked with her so could remember quite well a lot of the roles, skills and experience her job involved a couple of years ago.

But what did leave me shocked was realising that the world has (quite possibly) moved on a lot since I was last employed.  Are there new rules about CV’s now?  Do you need to highlight different things, include your blog or create a virtual CV?  Have the rules of the game changed?

I’m not really asking for the answers here. I used to be a bit of an expert on looking for and applying for jobs.  I realised just how much time has passed with me on the sidelines, not keeping abreast of the world, not knowing anymore.

I realises that the world is changing while I sit here on the sofa for years on end busy being sick.

Everytime I go out somewhere I see a new building, a new housing estate, a new shop, a new road that I’ve not seen before but that don’t look particularly new.  Because it’s only new to me.   It changed while I sat on the sofa.  if someone doesn’t tell me about online in the channels I visit – then I don’t know about it.

clock1-designwalla-flickr

image by designwallah on flickr

I wonder if other things are changing, developing and moving away from me aside from those physical environmental things.  Fashions, attitudes, social interactions, language, legislation, education.  Are the people who I’m closest to actually getting further away from me without me seeing it happening?  As their lives evolve and change with me just barely in it.

There’s not much I can do but to do as much as I can.  And I’m already doing that (and sometimes more).  So I can’t change the changes.  But perhaps I need to do more mentally prepared at just how much of an alien I am becoming in the worlds and lives I once knew so well.

I can see how relationships may not suddenly break from chronic illness, but gradually slowly over months and years the cracks can appear from all that wear.  How do I guard against that damage which is almost inperceivable to see happening, especially when I am typically too sick to do anything more than the meager amounts I can?

I guess life has no certainties for any of us.  You just have to do your best and make the most of what you’re given.  But it’s still frightening to lose so much – even if it some of it slips away slowly while you’re not looking.

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Back on D-Ribose – It’s Worth It For Me

After a 2 week break from D-Ribose I was feeling really grotty, run down and utterly exhausted.  It was only a few percent on the ability scale but it made a huge difference.

The only way for me to be sure that stopping taking D-Ribose had made that difference would be once I started to take it again if things improved.  They did.

I started back on D-Ribose 6 days ago.  I took a 3 times daily dose for the first 3 days to have a little kickstart but went back to my usual 2 after that as I’m a little low on supplies and cash.

Within 2 days I was back to just about the level I was before I stopped the D-Ribose.  Even with my period (which leaves me in a sort of slow motion with heavy limbs) I felt better.

image by babydinosaur on flickr

image by babydinosaur on flickr

As for tummy symptoms I experience the, THE worst constipation ever whilst being off D-Ribose.  So maybe in fact it does make things a bit loose but that actually balances things out for me.  Aside from that episode (caused I think by frequenting the wheat biscuits combined with 2 days of co-codamol and starting my period which seems to trigger IBS symptoms) there wasn’t much noticeable difference in tummy symptoms whilst I was off D-Ribose.

So for me personally it’s worth taking D-Ribose.  I hadn’t been anticipating quite the drop in ability level that I experienced and it took me by surprise.  But it did prove to me that I am getting a benefit from it – even if it’s so small a healthy person wouldn’t notice it.  It makes a big difference to me though.

D-Ribose Free for 10 Days

Ten days ago I stopped taking my twice daily 5mg 5g doses of D-Ribose to see if it had any impact on tummy troubles I get. After reading my post about possible side effects and contraindications of D-Ribose fellow blogger and ME-ite Ashy decided to stop taking it too for a few weeks to see what, if any the effect was.

After ten days the most noticeable thing is how much of a boost it seems to give me. Something I had been taking for granted.

My recovery time from even the smallest exertions is much worse and as the days have passed I’m feeling worse generally.  I’ve had aches and gland pain.  I’ve felt more sluggish in the mornings and it’s taken a 2-3 hoursfrom waking  to feel half human.  I’ve had a lot of pain in my neck, shoulders and jaw from tensing in my sleep and when I get tired.  In the evenings I am often counting down to when I can go to bed rather than enjoying the time I am up.

These are all things that I get from time to time but have not been so frequent or having such an impact in this last year whilst I have been using D-Ribose.

Despite having the desire and mindset to work on my art my reserves have been too low.  I effectively lost all of last week and am struggling through this week.  This usually happens when I am very run down, fighting a virus or have had a significant major exertion (pushing beyond my limits).

20070516_waiting_in_the_carI did have a large exertion 13 days ago but it was not beyond my limits. With that level of effort typically I would be over that in 2-3 days, maybe 4.  So by the time I stopped D-Ribose I was pretty much over the worst of it.  I suspect stopping the D-Ribose when I did meant the last part of recovery from it was hindered.

As for the experiment to see if D-Ribose is the cause of tummy troubles (gas, cramps, spasms, constipation, loose bowels and so on) I haven’t noticed any change.  I haven’t had tummy troubles every day, but neither have I been trouble free.  My gastric problems are so far about the same as before.

I realise it’s difficult to know how long to allow for problems/possible side effects like that to settle after stopping a suppliment or medication.  But I am certain the positive effects of D-Ribose have ceased.

My problem now is whether to keep with these conclusions after 10 days and get back to D-Ribose tomorrow.  Going back on it would possibly prove the benefits if my reserves pick up quickly after this fug filled week plus.  But it may not be conclusive about the tummy side effects.

If it does give me the boost I suspect then even if it does cause some gastric side effects it’s looking like a price that’s worth paying.

Can D-Ribose Make You Sick?

I started taking 10mg 10g of D-Ribose daily around a year ago.

I’ve had quite a few people find my blogs about D-Ribose and reporting to me problems they’ve experienced:

  • “a definite small but significant energy boost, but also had tummy pains”
  • “a tiny energy boost, but terrible constipation and migraines by the third day”
  • “just starting d-ribose and seem to be having reflux/chest pain”
  • “started the D-ribose over a week ago, and I’ve had abdominal pain, constipation, and now increased pulse and blood pressure”
  • “when I take the D-ribose it makes me feel dizzy.”

I myself have gastric discomfort which although I had experiences before I used D-Ribose it has been persistent throughout this last year.

pic by HckySo on Flickr

pic by HckySo on Flickr

The question is can D-Ribose be causing migraine, dizziness and gastric problems for some people?

The majority of references readily available on the internet, particularly with reference to it’s use with CFS/ME and Fibromyalgia, suggest it is relatively safe and harmless.

The only “reported side effects” I found when I started taking D-Ribose were a risk of hypoglycemia and possibly loose bowels.

I don’t think that gives the whole picture!

Once other people started commenting on my blog with their side effects, particularly gastric flare ups, I did some more research.  Then today I had a comment which told me that D-Ribose can cause increased levels of uric acid.  I’ve done some more reading.

I’m not an expert.  This post is a summary of what I’ve discovered so far.

Hypoglycemia & loose stools:

D-Ribose can cause transiet hypoglycemia and loose stools  in reference to large doses (10mg or over).  Dr Teitelbaum’s recommended dose is 3 x 5mg 5g daily for the first 4 weeks, then 2 x 5mg 5g daily after that.

“The first is a transient hypoglycemia (low blood sugar) that can be eliminated by taking larger doses of ribose with other carbohydrates (such as in juice). The second side effect that may occur in some individuals is loose stools. Again, this side effect has only been reported in very large doses, greater than 10 grams.”

Herx reaction theory:

pic by coldways on flickr

pic by coldways on flickr

There are some people who say that the D-Ribose gives your body and your cells the energy they need to function more efficiently and thus fight hidden/chronic/stealth infection in the body. It fuels your mitochondria.

When fighting this/these infection(s) the theory is it is possible you may get a Herx reaction.

It’s also possible that if the D-Ribose is fuelling your body properly you may be better absorbing other suppliments/nutritional elements that are fighting the infection and thus, ironically, feeling worse.

Typically the death of these bacteria and the associated release of endotoxins occurs faster than the body can remove the toxins via the natural detoxification process performed by the kidneys and liver. It is manifested by fever, chills, headache, myalgia (muscle pain), and exacerbation of skin lesions.

From Wikipedia entry on Herxheimer_reaction

More reading on Herx reaction http://lassesen.com/cfids/herxheimer.htm includes suggestions for treatment

And a mention about “die-off” and Herx reactions when de-toxing http://www.ahummingbirdsguide.com/treatingmeantioxidants.htm

In addition to possibly promoting a Herx reaction it could in itself cause an antioxidant effect:

“Ribose may support the body’s innate antioxidant mechanisms while promoting an antioxidant effect of its own.”

From 15 May – Almost Random Research

Uric acid:
pic by lunar caustic on flickr

pic by lunar caustic on flickr

Research has found that D-Ribose can contribute to the levels of uric acid in your body.

High levels of uric acid can cause gout, a form of inflammatory arthritis which usually effects the joints.  As the uric acid forms into crystals and settles around the body the immune system then attacks the crystals which causes inflammation.

Deposits of these crystals can also develop into kidney stones.

Read more about how uric acid can cause gout pain and kidney stones.

Research has shown that D-Ribose can contribute to uric acid levels and should therefore by avoided by those with gout or exisiting high levels of uric acid.

However, I am not clear whether the D-Ribose dosing for ME/CFS (typically 10mg 10g daily) can cause levels of uric acid to become dangerously high in individuals who do not already have gout or pre-exisiting high levels of uric acid.

Also high levels of uric acid in the blood does not always mean that a person will develop gout.

“Actually most people with hyperuricemia do not develop gout. Therefore it is not necessarily the high level of uric acid causing gout but perhaps a rapid change in its level.”

From Gout Prevention & Treatment on About Arthritis

Other factors  can contribute like dehydration, injury  fever, heavy eating, heavy drinking of alcohol , recent surgery, high blood pressure, abnormal kidney function and certain medications.

So it doesn’t neccessarily follow that D-Ribose can cause gout or kidney stones but caution should be exercised and it’s sensible that any new symptoms should be discussed with a doctor.

Warnings for use of D-Ribose:

pic by stewf on Flickr

pic by stewf on Flickr

Those with gout or high levels of uric acid should avoid using D-Ribose.

Diabetics should use D-Ribose only under a doctor’s supervision.

Hypoglycemics should exercise extreme caution in the use of D-Ribose.

Pregnant and nursing mothers should avoid using D-Ribose.

“PRECAUTIONS
Pregnant women and nursing mothers should avoid supplemental D-ribose.

Supplemental D-ribose may cause hypoglycemia and elevation in uric acid levels. Those with gout should avoid supplemental D-ribose, and those with elevated uric acid levels and hypoglycemics should exercise extreme caution in its use. Those with diabetes should also exercise extreme caution in its use. And those diabetics who decide to try D-ribose must be under a physician’s supervision and have their blood glucose levels closely monitored and their antidiabetic medications appropriately adjusted, if necessary.

ADVERSE REACTIONS
Reported adverse reactions include hypoglycemia, hyperuricemia, hyperuricosuria, diarrhea, nausea and headache.”

From guidance on vitmaker D-Ribose product

Typically persons with ME/CFS are sensitive to drugs and stimulants like caffeine and alcohol.  It’s not impossible to imagine that they can also be sensitive to D-ribose.

It may be “just a simple five-carbon sugar” but it seems the possible side effects, particularly for persons with ME/CFS, can be more than reported by some suppliers.

Like any drug or suppliment caution should be used.

My experience:

I’ve been taking D-Ribose for a year.  I take two doses of 5mg 5g (one scoop) daily. I have mistakenly said I take 10mg 10g doses on my blog in the past.  It is in fact 5mg 5g doses.

pic by pckux on flickr

pic by pckux on flickr

I find D-Ribose gives me a small but beneficial energy boost.

My condition has improved in the last year but only a few percentage points of the ability scale.  My concentration has improved a great deal and my cognitive disfunction is not as big a problem.  I recover from exertions faster than before I started D-Ribose.  An exertion that used to take me 4-5 days to recover from now takes more like 1 or 2 days.

I am still ill with ME.  I am still pretty much housebound and unable to attend to routine personal care tasks on my own.  D-Ribose has not been a miracle suppliment for me.

I found taking D-Ribose in the evening (after 5pm) can cause me problem with getting to sleep.  I take 5mg in the morning and 5mg in the afternoon around 3pm.

I have had gastric problems persistently for the year I have been using D-Ribose including constipation, lots of gas, pain beneath my rib cage (possibly gas, possibly gallbladder), stomach and bowel cramping and spasms.  An IBS friendly diet and lately probiotics (Lactobacillus) seem to be helping with gastric disturbances but neither is a cure.  I did have similar bowel and stomach problems before I started D-Ribose although it feels different to before.

I have no way of knowing whether D-Ribose is responsible for any improvement or any side effect like gastric problems.

I cannot know whether these are a co-incidence, directly related to D-Ribose use, or indirectly from D-Ribose allowing an slight increase in activity promoting it’s own improvement and/or it triggering unwanted side effects.

What does alarm me slightly on a personal level about the uric acid link with D-Ribose is that I have gout and kidney stones in my immediate family.  That and there’s reasearch which suggests you can have an inherited problem with processing uric acid and thus be prone to complications.

D-Ribose is an expensive suppliment.  I think it’s worth experimenting by stopping taking it for a month or so to see what effect this has.

Summary:

I am not an expert or a doctor. This post collates information I have read on the internet.

D-Ribose hasn’t been scientifically proven to help persons with ME/CFS but research has shown persons with ME/CFS have disfunction in the cells which D-Ribose has been shown to aid.

Dr Teitelbaum conducted a survey in 2006 which found it was effective for treatment of CFS and FM but it was  not placebo controlled and was conducted on a small group.

66% of the 41 participants found the supplement helpful and it produced improvement in all the areas tested: energy, sleep, mental clarity, pain intensity and well-being

D-Ribose can have side effects especillay in large doses (10mg or over).

You should avoid taking D-Ribose if:

  • you are diabetic
  • you have gout
  • you have high levels of uric acid
  • you are pregnant or breastfeeding
  • you are hypoglycemic use only with extreme caution

Side effects can include:

  • hypoglycemia or transient hypoglycemia
  • diarrhea
  • nausea
  • headache
  • high levels of uric acid in the blood (hyperuricemia) which could possibly leading to gout
  • high levels of uric acid excreted in the urine (hyperuricosuria) which could possibly lead to kidney stone

Anectdotally reported side effects also include:

  • constipation
  • dizziness
  • migraine
  • abdominal pain
  • difficulty getting to sleep
  • increased pulse and blood pressure
  • detoxing or antioxidant reaction
  • herx reactions (fever, chills, headache, muscle pain, skin problems)
pic by -lif- on flickr

pic by -lif- on flickr

Persons with ME/CFS or FM may find D-Ribose to be beneficial.  Caution should be exercised and you should check the warnings.  If you take D-Ribose and experience any new symptoms you should consult with a doctor.

My previous posts on D-Ribose can be found here:

ME Aware Blog for ME/CFS Awareness 2009

International ME/CFS Awareness Day is 12 May with awareness events and campaigning throughout the month of May.

I’ve started a new blog ME Aware to collate all our blogging for ME/CFS Awareness this year at  http://meaware.wordpress.com

As well as blogging I’ll be looking at other onine activities by individuals. So whether you blog, use your status updates on Facebook/Twitter/MySpace/etc, post pictures, photos or videos – drop by ME Aware blog and ask to be added to the participants list.

There are also a few new version of the badge ideal for profile pictures as well as links to badges from other sources.

ME/CFS Awareness


Fundraising


Push It 11 Sep 2011

for ME Research

CFS Links & Resources

See my entire list of CFS/ME/CFIDS links to sites, articles and resources via del.io.us
http://del.icio.us/rachelcreative/M.E.
New stuff is added all the time.