This article is specificly a progress report on my first week taking Manuka Honey after my article “Manuka Honey – The Bees Knees?“

To start of I would like to say that taking Manuka Honey is hardly any problem at all, as Honey goes its lovely and I certainly haven’t had to spread it on toast or mix it in to food. In fact I actually feel like Winnie-the-Pooh sat there eating honey, something I could get quite used to and I’m sure many of you could too. It’s certainly nothing like taking extracted Aloe Vera which is a rather unique experience and I still enjoy watching the faces of innocent victims who I may have convinced to try some of that.

The positive side

Anyway I digress as ususal. The first three days of taking 5ml of Honey at night were really quite good, I simply had three good days. Now although its rare to have three good days I can not make any assurances it was down to the Honey. The effects felt were an increase in energy and a slight decrease of pain, fatigue and fog. Now say for a moment this was the Honey, I could say that it was more effective than any drug other than Morphine and no drug for Fibro I have taken has been responsible for this scale of improvement. However I can not say this is down to the Manuka Honey, without a proper double blind clinical trial I would not say the Honey is beneficial or push the taking of it. All you can hope for is for me to say something like “I think its worth a try as it could have been responsible for an improvement in me and my great uncle” however we are no means there yet.

The Honey also seemed to have an effect on Morphine withdrawal which is surprising as according to my specialists they don’t know of anything that can truly help in that department. What seemed to happen was a delay to withdrawal, in fact I actually accidentally did not take any Oramorph for 12 hours by accident, this is because I am used to letting my body tell me when it needs morphine as I’m trying to cut down unsuccessfully (but that’s another story.)

The negative side

Unfortunately after three days there was a change, now I have to say at this point I had been advised to increase from 5ml to 10ml a day which I wish I had not done as the increase could also have caused the following problems. Firstly was a change in the effects on morphine withdrawal, Instead of seeing the warning signs I simply didn’t see any, I then hit a big withdrawal wall as if I had been ignoring it for an hour or too. So the a Honey was possibly responsible for increasing the onset in severity of withdrawal. I then found I was having to take quite large doses to rescue myself, something I’m not entirely happy with. Also I have been getting headaches mainly in the evening a few hours before I’m due my next dose. Now this could be because I’m taking it every 24 hours instead of 12 but I am concerned its having an impact on my blood sugar. I get headaches quite a bit and they are normally attributable to a cause, perhaps I have had more sugar in previous days and suddenly stopped (occasional sour worms sweet habit), perhaps I had had too much sugar, a lack of caffeine, dehydration etc etc. So I am quite sensitive to things like that, when I guess the cause right I can eliminate the headache in as little as 10 minutes but sometimes it can last hours after trying everything. In this case I have decide to reduce back down to 5ml and if it continues I’m going to monitor blood pressure and blood sugar levels more as its a little concerning.

So overall in week one it’s been a mixed bag, a very good start to the week but not such a great ending. As I’ve said I have no idea if this is down to the Honey one bit but as people experienced with Fibro will say we know something is responsible for changing something to our normal balance. It’s made things a little more unpredictable and I can just tell there is something going on in my body that’s new. So I’m going to continue with 5ml once a day, I have two Jars and I will see them through as long as side effects are mild or moderate and I will report back. I certainly feel I need to give it more time, perhaps I’m just adjusting to it, perhaps I was fighting one of the many cold viruses going round my family at the moment, who knows. But as ever I will keep you posted.

Product Information

I am taking 5ml of 12+TA “ManukaPharm” Manuka Honey each night

Have you tried a Manuka a Honey?

Do you have experience taking Manuka Honey for CFS/ME/Fibro or any other condition? If so I would appreciate your comments, you can comment in the box under every post, we will never ever ever pass your email address onto anyone and just keep a look out for a confirmation email in your inbox or junk if your a first time poster.

Gosh the blog can be all doom and gloom sometimes! Although many with Fibro would agree we do have a lot to moan about.

Anyway, I have some good news. The hospital phoned me the other day to give me a new appointment cancellation with and Endocrinologist closer to home. I went along and she was very nice and listened to what I had to say. She agreed that my morphine could damage the Pituitary so that was a good start……

She has arranged for the blood test, injection, then blood test (I will get the name of the test researched when I can) in the day clinic rather than the Pathology lab. This means I can use the EMLA local anaesthetic cream for the blood tests which should stop any problems. This means I can stay horizontal afterwards to prevent the clinical shock phenomena kicking in so all should be fine.

For the MRI she is going to talk to the Radiologist and see if there is any way to image the area without contrast solution because I’m just going to be in too much pain/ risk otherwise. If we have to go for contrast solution only she will organise an anaesthetist etc to be there and will write to me with the findings. I really hope they will go for no contrast, at least give it a try but I’m no MRI expert so I can’t really guess at the likelihood. But fingers crossed, at least she took it seriously and didn’t automatically think I was trying to get out of it for fear or anything like that….. In fact MRI’s etc are about the easiest test you can have as long as your not scared of small spaces. In fact the only problem they might have is waking me up at the end as I tend to fall asleep.

Thought I would share the good news to you all. I hope everyone has had a good festive Christmas and a great new year!

Just a quick update after I saw an endocrinologist recently. I was referred after a series of blood tests showed abnormal (low) low serum testosterone. The theory is that using over 100mg of morphine sulphate a day damages the Pituitary gland. The most recent test showed:

High Serum alkaline phosphatase

Low Combined total vitamin D2 and D3 Level

Low Serum cortisol level

High Serum prolactin level

Low Serum testosterone level

The pain management consultant and the specialist pharmacist now managing my morphine had asked for these tests because of my morphine intake and combination of symptoms. Unfortunately the Consultant Endocrinologist was less inclined to go along with this theory and suspects it could be flash in the pan. She also thinks there could be a link with the steroid based creams I use for Psoriasis. We then discussed the next move which would be a contrast enhanced MRI if the pituitary gland. Here comes the problem…. Due to the pain issues I have with cannula’s I wouldn’t be able to have a contrast enhanced MRI. Yet again we come to this barrier and it is very frustrating, doctors who have tried it before seem to share the opinion they wouldn’t do it again and no matter which consultant I discuss it with they refuse to acknowledge its not something that should happen, have no idea how to explain it and change the subject as fast as they can. It appears that for some reason they think if they acknowledge the problem they will have to attempt to solve it and they haven not got the first clue how to do it. Therefore the Endocrinologist wants to discharge me back to my GP and request he refers me to someone at my local hospital instead! Her reasons were that for her to conduct the test she would need to find someone in the country to write to about my specific problem and then I would have to be admitted to a central hospital quite far from home for them to be able to conduct the contrast enhanced MRI and this would take months to arrange. So we appear to be at a dead end again, where blood tests seem to show issues but no one can agree on what they show and to test further would require a cannula! Meanwhile I continue to suffer the effects of low testosterone!

(Background on the Cannula issue: Since I was a child I have had problems with blood tests. For some reason they are so painful it’s difficult to describe but they are my number 10 in terms of pain score. I have had various other injuries, broken bones etc which have been really painful but nothing like the pain of a blood test. As soon as the needle is out the pain goes but about ten minutes later I go into some sort of clinical shock where i go white, green and pass out for a few minutes. A GP who was supervising a blood test when I was a child thought he had killed me and was in a right worried state about it. It was thought I had a fear of needles and this was triggering a pain response psychologically but after a long period of work with a psychologist the conclusion was that it was a an unexplained physical response and I had no fear of needles or the process (which I always knew) This has now been solved with the use of EMLA cream and having blood taken lying down a position I stay in for some time after the test. However we have the same issue with cannula, as soon as its in I’m rolling around in agony and start to have the same shock response. After this was tried last time the site was painful for over a month and painful to touch for a month longer. The doctors who have tried it don’t want to try it again and can offer no explanation as to why it is so painful. So much so no one wants to deal with it! The consultants who I have attempted to discuss this with are in double figures but no one seems to believe the pain response is real, other than those who have seen it first hand and whenever I try to explain it people think I’m making it up to avoid a test or that its psychological and nothing more. But when it comes to needing a cannula for test or treatment no one wants to attempt to solve it with me. I have found no other person that has the same response and as I say no doctor will deal with it and it always leaves me at a dead end)

Well as the title suggests I have my appointment through for the Specialist Pharmacist at Nottingham University Hospital. This appointment is for us to come up with a plan to reduce my Morphine intake. As you may know I am dependent on & tolerant of morphine. I have been using both Oramorph solution and MST. I firmly place the blame on the doctors who decided they could treat my chronic pain with MST while still treating my breakthrough pain with Oramorph! I can only only say to everyone out there, if you suffer from chronic pain and they want to treat it with morphine, get specialist advice first!

I will be having blood tests to check my Pituitary Gland is producing enough Testosterone first as this is a side effect observed with Males taking over 100mg/day of Morphine Sulphate and can produce similar symptoms as both Fibromyalgia & Morphine dependence which rather complicates things. I am fairly confident my new Pain Management Consultant is doing the right thing, my concern is they want me to completely come off morphine where I would prefer to be restored to my original state. This was having Oramorph in the the house for severe Myofacial & Neuropathic pain and using it maybe a few times a month and most importantly NOT on a regular basis. Unfortunately I know from experience when I’m in this state nothing less than Morphine can help. I do however also worry that my tolerance will either not reduce back to this level or it may take a long long time as I have found it takes far longer to wean off than I had originally thought!

Appointment is in September (NHS)

Well I had my Pain Management Appointment in Nottingham today. It went quite well and I got the confirmation I needed that the strategy of using morphine for everything was not the correct one.

We have a bit of a plan for the future, which is twofold:

1) To reduce or come off Morphine. I will need to have a blood test to measure my Testosterone levels as through the consultants experience this can become a problem when a male patient uses over 100mg/day due to the effects in the Pituitary Gland. They need to check that the gland is not underproducing Testosterone as this can lead to a lot of symptoms similar to Fibromyalgia. I can hazard a guess that they want to take this out of the equation before treating my “Fibro.” Due to the problems I have with Blood Tests he is going to request a Vitamin D test at the same time as he will probably want one down the line and we might as well get it done at the same time.

2) To address the causes of pain. He wants me to attend a 10 week course of therapy consisting of ten sessions. They have seen a great deal of success in treating people with similar conditions using a variety of knowledge based training about the perception of pain. I’m not quite sure what system they use but it will be one of these CBT (Cognitive Behavioural Therapy) approaches that are around. He said that when research has been done using advanced brain imaging they have found parts of the brain not associated with pain perception have changed into a pain perception role in patients with long term pain. He also said that if I had problems in childhood, there could be a lot of re-wiring to do in my brain, but he still thinks this is the way to go. He also suggested I buy a book which I’m guessing is the basis of this pain course, I will get a link to it on this post as soon as I can and also put it in the Products section on the website.

My slight concern is that he didn’t quite grasp my theory that the problems I have with blood tests, that I have had all my life, point to there being something wrong with my body’s pain system linked to some sort of central sensitisation. However it could be that he thinks that this course will somehow deal with this. Either way if I’m going through a course of treatment and they find the bizarre things my body physically does, other people may find they will be in a better position to recognise this and perhaps get something done, being far more forward thinking and having more resources available than my local NHS Trust. At the end of the day, it’s moving in the right direction and I will only find out by doing it. On the subject of my local NHS Trust, there may be a problem with funding for me to attend this course. Apparently my Trust have a bit of a history of refusing to fund this treatment, unless a patient has had Spinal Surgery. So that could be a problem we will come up against, but we will cross that bridge should we come to it.

So fairly positive stuff, we will see how successful it is and of course I will report back here for you to see. I was in a great deal of pain during the appointment and the journey, however I had run out of Oramorph and I was trying rather unsuccessfully to use MST in its place. I had various overlapping pain problems today and it did make the whole thing quite traumatic to say the least. I do worry about having to travel every week to Nottingham for this course, I know it’s needed and I will try my very best, but it could prove challenging. I will have to see what time of day it is and come up with some sort of plan of attack!

As always feel free to ask questions, I will try and dig the real ones out of the piles of junk mail I get.

Here is the link to the book the Consultant recommended I buy