Archive for July, 2010

Low Energy Reserves

 

disability shadow

I’ve been on low energy reserves for weeks now and it’s starting to get a bit frustrating.  I have work to do and clients waiting.  I am doing little bits of things – watering my plants, feeding my tomato plant, a bit of baking – but it’s very wearing very quickly.

I tried to do some painting a couple of weeks back, thinking perhaps I was low motivation not low energy.  I got a little bit done but soon I was messing up really badly and realised just how exhausted I was.  Still not sure how I’m going to fix the mistake I made but I’ve been too knackered to think about seriously.

Paul says I shouldn’t underestimate what effect our holiday had on me as we did stuff everyday – more stuff than I had done in at least 6 months before.  Plus the hot weather has an effect.  Plus hayfever does too for me.  But I feel like a bit of a failure for being so tired day after day and not being able to kick the exhaustion.

beside the seaside

I still maintain that the LDN is helping.  Although it’s hard on days like these to see that is when I feel so wiped.  But I suspect without the LDN things would be very bad indeed.

Really I should be used to going with the flow on these things.  No point trying to force it when the body says no.  You just lose more by pushing it.  But I feel riddled with ME and I don’t like it.  Goes to show that the LDN really has been boosting me more than I realised.

It could be this latest downslide is due to being back on eating wheat, despite testing negative for celiac.  When I started eating wheat everyday again in prep for the blood test I started to feel sluggish.  I don’t know if my body got past that or whether sluggish became part of my normal everyday parameters.

So I have to kick wheat again.  Hard now I’m enjoying all that wheat has to offer.  But if it is contributing to the knackeredness there’s no question of the benefit of sacrficing lovely tastes.

i'm reading grave sight

I’ve started reading again.  I wonder if the reading is contributing to the exhaustion.  Small things can add up and even mental stimulation is exertion.  But I do find even when the body feels wiped at the moment I can read a bit of an easy fiction book.  So it’s hard to know if that it turn is making me knackered or a welcome distraction from it.

my garden 'relaxer'

What I do have is my chair for the garden in which I can recline.  I can be lying down (just about) and supported and secure at last.  I decided to look at it as an investment of disability equipment and paid a bit extra to get a better quality one with a super squashy cushion and sturdy frame.

The only problem is I’m struggling to give in to relaxing.  A lot of the time all I want to do is eat or sleep.  So my auto response is to get busy to prevent me from sleeping in the daytime (something programmed into me when I was very young I think and so hard to break).  As a result I find myself wiped and restless at the same time.  I need to relax but I want to pace.  Of all the times it should be easy to let go and nap *this* should be the easiest time to do it.  Sigh.

LDN for ME/CFS

I take 2.6ml of LDN each night and 2.6ml each morning for ME/CFS.  It definately helps me.  It is not a miracle cure and I am not 100% but it does give me a significant improvement. This is a summary of the information I have about LDN so far.

I started LDN in December 2009 but it took a while to find the right dose.

My sleep is more sound and deep, my brain /cognitive function is better, my energy levels and stamina have improved slightly, my recovery from exertions is better.  When I overdo it I still get wiped but I don’t think it’s as bad as it would be without the LDN.

But some experts recommend that people with ME/CFS take it in the mornings as they have poor sleep already and LDN can disrupt sleep.  I tried taking it in the morning and it made me a spaced out and made my symptoms worse.  For me it helps me sleep, both getting off to sleep and with the quality of sleep I get.

I have tried higher doses but it has not agreed with me.  I started on 3ml which made me feel quite ill and brought a lot of symptoms back.

With LDN a higher dose doesn’t necessarily mean better results.

The guidance on starting LDN and adjusting the dosage I have had is:

The introductory dose is 1.5 mg of liquid LDN for the first 2 weeks of treatment, increasing by 0.5 mg every 2 weeks until the individual find the dose that suits them best.  If there is an increase in symptoms when taking a higher dose, it might indicate that this dose is too high.  Lower the dose, and improvements should become apparent. The maximum dose is 4.5 mg which most people find effective and stay on that daily for maintenance.

The 2.5ml dose has been optimum for me. If I try to go to 3ml I start to feel very nauseous after a few days. It’s a tiny increase in dose but doesn’t seem to agree with me – bringing back my ME symptoms.

Here’s how I got hold of LDN for ME/CFS:

My GP is supportive of my ME but her practice would not allow her to prescribe LDN for ME/CFS on the NHS due to ‘lack of evidence’.  There may never be a lot of evidence as it’s a cheap drug to make so big pharma companies aren’t too interested in funding trials.

Unfortunately unless you have a GP or a specialist who is willing to write a letter confirming your diagnosis and saying they are happy for you to try LDN the following method is not going to work for you.  There are other ways so see the links at the end for further info.

  1. I contacted www.e-med.co.uk to tell them I was interested in trying LDN for ME/CFS.
  2. They emailed me back to say they would need a letter from my regular treating physician (eg consultant or GP) confirming my diagnosis and stating that they are happy for me to try LDN. (I know this will be a sticking point for some people wishing to try LDN).
  3. I spoke to my Lovely GP on the phone who was happy to write a letter in which she gave my diagnosis as Chronic Fatigue Syndrome (CFS), said she was happy for me to try LDN, explained why she wasn’t able to precribe it for me (because she’s not allowed by her practice) and that this was due to a lack of evidence of it’s use with CFS. It took about a week to get the letter.
  4. I scanned the letter and emailed it to e-med.
  5. I registered with e-med (cost £20 for a year) filling out a short registration form where I was able to briefly explain my health problems. Within a few hours I had my PIN and password by email.
  6. I was then able to fill out the online LDN prescription request form. That was in the evening outside of normal working hours but within a few working hours of the next day they had confirmed my prescription. You can ask e-med on the form to send you the paper prescription, send it to a pharmacy of your choice or they will be send it to Dickson’s Pharmacy in Glasgow who specialise in LDN prescriptions.
  7. I requested the prescription be sent direct to Dickson’s Pharmacy who are able to supply LDN mail order for around £15 £17.50 a month for liquid or £27 (now more in 2011) a month for capsules. Be careful if you choose to use a local pharmacy – best to ask them to check the cost first as often it can be much more expensive.

When I need a repeat prescription I fill in the online form using my membership details on e-med’s site.  The prescription covers 3 months and costs £15 which is automatically paid for off my credit card.

I request on the form that the prescription be sent to Dickson’s Pharmacy.  They send a new bottle of LDN by registered post once they get the repeat prescription, then 4 weeks later and 4 weeks after that.  I’ve given permission for them to hold my credit card details on record so the LDN is paid for automatically when they dispatch it and it costs me £17.50 a bottle.

With the yearly membership of e-med, the prescription cost and the cost for each bottle of LDN it works out as £22.70 a month over the course of a year.

You can also access LDN through www.prescribe4me.co.uk – I understand they will do a consultation with you that may mean you do not need your own doctor or specialist support to start taking LDN.

LDN Information Links and Resources

If you want to read up some more about LDN here’s some of the sites and resources I’ve used:

ME/CFS Specific

Dose Timing

Campaigning for LDN

And here’s a dictionary entry that gives a sound file on how to pronounce Naltrexone http://dictionary.reference.com/browse/naltrexone

UPDATE 15 August 2011: I’ve updated the dose and prices in this blog post. I’ve been taking 2.5ml nightly since Dec 2009 and I have seen a significant improvement. It is not a cure, I am not back to a normal life but it has given me some relief and is worth it.  I have more energy, I recover from exertions quicker, my communication and cognitive function is greatly improved, my sleep is better (deep and sound).  For the first 6 months I felt a lot brighter and like I had more energy but my body struggled to keep up with the energy I thought I had. Slowly my routine changed and I became able to do a little bit more. It is hard to quantify the improvement which for many healthy people might seem inadequate but LDN has been the one thing that has offered routine improvement and slowly I am getting stronger.  It does not make me immune from crashes, overdoing it or flares with things like a virus – I have had a couple of setbacks.  But recovery has been easier and I am soo back to enjoying better levels of heath and ability than I was before LDN.

I continue to get my LDN in liquid form from Dickson’s who have been very good.  I had to have a break from LDN while I took strong painkillers for a back problem around May 2011 and that let me see just what difference LDN makes to my condition. I wouldn’t want to be without it.

UPDATE 16 January 2012: I’ve updated the doses in this post. I’ve been taking LDN in the mornings as well since Dec 2011.  Currently at 2ml each morning and 2.5ml each night.  I’m not able yet to quantify if that is helping but I’m not getting any side effects. I have just had a cold/virus which lasted for 3 weeks but for my husband lasted 3 days. However in the past a virus like this has lasted for 3 months so maybe there is some immune strengthening. It’s hard to know. I continue however to feel the benefits previously described. I’m looking to increase my dosage once I can get my GP to write a supporting letter for me as e-med will only prescribe up to 4.5ml daily without a letter from your doctor.

UPDATE 19 February 2013: I have been double dosing for a year and my current dosage is 2.6mls morning and night. Over the last year I have focused on trying to maximise the on the improvement LDN has given me.  I am stronger and able to do a lot more (relatively).  My ability to recover from exertions is better as well as being able to exert myself more, and push myself a little knowing I can recover better.  I still have to have rest days and plan activities but these can occur more frequently and doing more.  My suspected OI problems limit intensity and I think without treatment for that I’ll struggle to do anything that gets my heart really beating.  After doing regular exercise my heart rate at harder levels of exercise has not improved at all which adds to my theory that there is an element of OI at work.  But there’s no denying that the LDN has given me a significant and very good increase in function if within limits.  All my symptoms except for IBS are better.  I can still crash and when I overdo it symptoms come back quickly. But day to day LDN have given me much more life to enjoy.

Those Symptoms Sound Familiar … Or Is It Hyperchondria?

Am I going to sound like a hyperchondriac if I tell my GP about the “tired cough” I’ve had since I’ve been ill with ME and how I get breathless when I do too much and please can I have a referral for a chest xray to see if I have sarcoidosis?

And I’ve never mentioned it because it doesn’t seem to fit with ME but fatigue, headaches and cough were my first symptoms?

Yep I’m going to sound like a hyperchondriac.

But something about this story in the Telegraph, then subsequent reading about scardoisis, has made me sit with my mouth hung open thinking it could all fit.

http://www.telegraph.co.uk/health/men_shealth/7843500/Sarcoidosis-Mystery-illness-poleaxed-me-and-perplexed-my-doctors.html

“‘It’s possible you have a disease called sarcoidosis,’ the physician told me. I think he was enjoying the detective work, and I felt the same. Sarcoid (doctors use the short name), which sounds like something you might catch from the French president, is an inflammatory disease in which granulomas (clusters of immune cells) appear, most often in the lungs or the lymph nodes, though they can be found in almost any organ. In some cases there are no symptoms at all; in others, all sorts of debilitating disruption is caused.”

Now I know there’s a list of things I’ve wondered about in the past.  The list of stuff others with ME have eventually been diagnosed with, the “do I actually have …” list.

Behcets Disease, Celiac, Chairi Malformation, Chlamydia Pneumoniae, Hypereosinophilic Syndrome, Kleine-Levin SyndromeOrthostatic Intolerance, Polycthaemia, EDS and more.  Actually I really wonder about  Chairi Malformation and OI- the others don’t fit so well. But now I can add Sarcoidosis to the list.

The fact that there is little in the way of tests that are readily accessible on the NHS doesn’t help.  So many conditions considered rare (so your GP says “oh no that’s incredibly rare, I doubt you have that”) makes me wonder how rare they would be if people as ill as me could just access the tests.

The silver lining (?) here is that there are limited treatments for sarcoidosis although Prednisolone is effect for a lot of people – but that LDN can also be effective with sarcoidosis and I’m already taking that.

Sigh.  What to do.  I’ve been here before – when to bravely ask for a test/referral and to push or when to not.

UPDATE: I missed a couple of my misdiagnosis list: Sjorgens Syndrome, Lyme, Lupus, Leaky Gut Syndrome and Thyroid (even-though-GP-say-normal)

This Stuff Actually Works

I should really listen to my mum.  She suggested I try Aqueous Cream for my eczema. It’s really cheap, she said. You can use it as a soap, she said.  Use it as a soap? That’s ridiculous. Well, no, apprently not.

It cost me £1.49 for a big tub (which is probably going to last me a year at least) and it does indeed make for fab soap.  Washing my hands is suddenly not the excruiating experience it used to be – it’s actually rather pleasant.  And it’s helped my Pompholyx eczema loads.

Sorry mum – you did know best.

Whilst I was buying up supplies from the online pharmacist I decided to try this dry shampoo stuff too.  It gets lots of good reviews from people who use it because they’re on the run – not just people who are too knackered to wash their hair when they’re getting unexpected visitors or venturing out and have used all their energy already.

I had a squirt of Batist Dry Shampoo Tropical today – my hair wasn’t totally minging but looking a bit limp and on the turn.  Looking decidely deshevelled.  And it went “pooooof” – all lifted and not limp and not greasy.  Weird!  My hair looked a bit lighter – probably because I hadn’t brused it out properly but being blonde it doesn’t matter too much to me.  And I like the tropical smell personally so I even whiff a bit cleaner than I did when I got up. Yeah!

I’m not on commission – I’m only linking to where I bought stuff in case anyone wants to know more and that site has been good value.  I like to get my hayfever tablets from them as they are so cheap on the generic brand stuff.  And I’ve bought all sorts of stuff from them.

So I have two positives to share with you.  This is to make up for (and hide) my distinct tired and grumpy self which has a big fat dose of M.E. plus PMT complete with cravings that I can’t act on because my IBS is flaring and hayfever with scratching throat and sore eyes. Grumble.  But at least I have exotic hair and clean hands.


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.