Personal

An update from me, about me!

I realise I have not posted for a while or been very active on social media. There are a number of small reasons, however I do tend to go through natural phases and I have been concentrating on a few other ventures. I had also put a lot of intensive effort into is website to generate all the information as quickly as possible to give the best chance at growing an audience and to make sure there was comprehensive information for everyone on most subjects.

Medically my Vitamin D seems to be in normal ranges although I have not noticed much difference personally. I’m still on testosterone replacement therapy although the last blood test showed no improvement in my testosterone levels but instead my PSA was elevated and was about double what it should be. I attended a Urology consultation which was an experience, the doctor basically opened with “we need to confirm you have Prostate Cancer,” took no medical history, took no medication list, asked no questions about any other things that could elevate PSA, prescribed me a drug incompatible with my current medication and scheduled a follow up to discuss my next test results for before the test itself. So all in all not very successful and far bellow even the average standard I expect from the NHS nowadays. So its now down to my opinion that its a symptom of Chronic Prostatitis versus the Consultants opinion that its Prostate Cancer, let’s hope I’m correct!

Also becoming problematic is arthritis in my knees, I’ve noticed pain and inflammation while up to now they have just been a bit noisy. I have put on a little weight over the past year or two so it makes sense to be honest. Otherwise I’ve managed to reduce my morphine to about 50% of its peak which is good however I’ve noticed far more problematic shoulders of late and I’m going through Voltarol Emugel P like its water.

Otherwise I’m still here, I haven’t had to do much maintenance of the website as the information is still very current and applicable. I’m also in the process of being prescribed the only drug on this website I haven’t been on so I guess I will be able to provide a personal perspective on it soon, its Gabapentin by the way. I’m still contactable through social media or the contact form so feel free to get in touch, I’m quite bad at monitoring comments at the moment as real comments just get lost in spam I’m afraid. If you do require some response please contact me through social media.

I will however wrap this up as its meant to be a short update and I want to get this online before I get myself distracted with something and forget completely only to find it in my drafts once its a little out of date. I really really hope the site is useful for everyone, I’ve put a lot of effort into it and have tried to cover all subjects relevant for sufferers in the UK.


My Manuka Honey update 1 week on


Free Sample of “Gloves in a Bottle” Dry Skin Lotion


Personal Update


Bottom half cold, top half hot!

Thought I would do a quick personal post as I haven’t done one for a little while. Due to the hot weather we have had recently it has made a little problem of mine all the more uncomfortable. My legs and feet are always cold, as I live from bed they are normally under the covers, but my top half is nearly always hot! What’s that all about? Its extremely bizarre and a bit of a nightmare to manage. I am not joking when I say I can be dripping with sweat and have stone cold legs. I am guessing circulation may be one of the problems or perhaps some of the nerves problems down by L5/S1? Who knows, it could even be down to morphine dependency and the damage to the pituitary as that messes with the bodies thermostat at the best of times.

When I am out of bed I nearly always wear long johns. A good friend came round for a takeaway and a chat the other day, I took my morphine and had a nice time for a couple of hours. But I hadn’t put my long johns on, that night was terrible, I was up all night in pain. I couldn’t sleep because the pain was so bad I couldn’t actually keep still. Around 4am I took a hefty narcotic cocktail which finally put me out ending the misery. It had been a week since I last had a day out of bed but I was still “recovering” from that, perhaps I did it too soon or should have put my long johns on. To be honest its quickly becoming my number 1 mobility concern and need to think of a better solution, if I wear long johns to much I can get UTI’s which are not nice either. Oh and I forgot to mention on my first edition that it was one of the hottest days this year too when these happened!

Duloxetine is my little wonder drug though, before taking that I had the pain in my legs 90% of the time. Its like a crushing pain, as if your legs are in a high air pressure tank, its really bizzare. However overnight the first dose of Duloxetine flipped the odds and I was 90% pain free in my legs (well as far as that specific pain goes anyway). I always remembered my maternal grandad’s knees sounded like someone was scrunching paper all the time, my mum developed this in her 40’s and I developed it in my teens! Not much hope for me although x-rays have come back clear apart from
Osgood-Schlatter’s Disease as a teenager. Not much hope for those knees then!

It just reminded me of the pain and suffering a simple home visit can bring and the person visiting has no clue of the result, although I wouldn’t really want them to know and wouldn’t change a visit, maybe just my choice of Long Johns!

I would like to hear from anyone with similar problems, especially those in their 20’s or on the same medication.


A personal update about me and a lovely little blog I found this morning


Vitamin D Deficiency

I thought I would write a post about Vitamin D deficiency as it seems to be a subject on the lips of quite a few at the moment and I have also added various Vitamins & Minerals to the Helpful Products section of the website.

Firstly I would like to mention Vitamin D without Fibromyalgia or particularly without a diagnosis as I think this offers a valuable insight into why it seems to be such a talking point. A few months ago a friend came to me to ask some advice about his health. He is one of those people who works all the hours god sends (in retail) but never seems to take a sick day. However on this occasion he was feeling out of character, fatigued and rather down. I went through the usual questions to probe his situation more and assess signs of stress, anxiety and depression. It became obvious that there was nothing “situational” in his life to cause these feelings and this led me onto considering chemical factors. I had a little think about my situation and his which on the face of it are very different, more like seeing what superman has in common with someone in a coma! I realised that he has spend the last six months literally in the dark, as had I, for different reasons and one of my problems was low Vitamin D. His lifestyle involves getting to work in the dark, coming home in the dark and spending all day indoors. As we had worked out his problem probably wasn’t situational but more chemical Vitamin D seemed a good starting point so I advised him to speak to his GP. A couple of hectic weeks passed until I spoke to him again but I was pleased to hear he had been to the doctors, his doctor has said the same as me, the doctors opinion was low Vitamin D and he prescribed a Supplement. He has taken these for a week or so and felt much better.

This got me thinking as at the time I was preparing to write an article about Hay Fever and I was explaining experts belief this year is going to be a really bad year for people with the condition. The reason was because of our particular long, cold and dark winter that we have just had in the UK. Now we get out Vitamin D from sunlight so perhaps this could be responsible for more than just a Hay Fever epidemic (if you will), but may be causing low Vitamin D in people more than a typical “seasonal variance.” This got me researching the problem and discovered journalists from the Mirror had been talking about the same subject in this article on their website.

Blood tests showed that I had low Vitamin D last summer and I had read up on the problem and how similar some symptoms were to Fibromyalgia but also how more likely people with Fibromyalgia were to have low Vitamin D. Depending on the severity of Fibromyalgia it the individual patient may determine how much it effects your mobility. Some patients diagnosed with Fibromyalgia are lucky to be able to hold down jobs but some of us, myself included are not so fortunate. I’ve hardly seen the sun in six months as I spend 95% of my time in bed and my best times are generally in the middle of the night. Some people with Fibromyalgia are very much the same. To prove my point about how similar the symptoms are here are some symptoms of low Vitamin D listed on one website:

There is no clear pattern of symptoms
People remain asymptomatic despite low levels
Fatigue
General muscle pain and weakness
Muscle cramps
Joint pain
Chronic pain
Weight gain
High blood pressure
Restless sleep
Poor concentration
Headaches
Bladder problems
Constipation or diarrhea

To me, that looks like a very similar list to the symptoms I associate with Fibromyalgia!

I think the best thing I can do is promote awareness of low Vitamin D, its symptoms, its relationship with Fibromyalgia and its relationship with the UK 2012/2013 winter. It may be worth discussing with your doctor especially if your symptoms have worsened over winter or if you are on a path towards a Fibromyalgia diagnosis. If your scheduled for any Blood Tests it may be worth asking for a Vitamin D level if its not already on the list.

To put things in perspective supplementation is sufficient for most and if you have low Vitamin D levels make sure you get tested after being on supplements a while to ensure its working and their isn’t a different reason behind the levels that may get missed. It is also worth mentioning that Vitamin D goes hand in hand with Calcium, basically Vitamin D helps the body to absorb Calcium so keep an eye on the relationship between the two on blood tests. If you have low levels of both and think it may be more than a lack of sunshine then read up on Hyperparathyroidism (Parathyroid Disease) but obviously try and keep things in perspective and discuss things with your GP. The long term risks of low Vitamin D include an increased risk of cancers (various studies show) so as it can be solved fairly easily it might be worth your while.

Too much

I would always speak to a Doctor or Pharmacist before taking any supplements. But certainly if your taking more than 1,000 IU. It is important to be monitored while taking supplementation so what your body is absorbing can be monitored and toxicity prevented. You can’t get too much from sunlight only but you can get too much taking it by mouth, as it is fat soluble the body has a hard time getting rid of it if you do take to much. Problems are toxicity, stripping calcium from your bones, kidney problems, stones and increased risk of cardio vascular disease.

“Very high levels of 25(OH)D can develop if you: take more than 10,000 IU/day (but not equal to) everyday for 3 months or more. However, vitamin D toxicity is more likely to develop if you take 40,000 IU/day everyday for 3 months or more.” – http://www.vitamindcouncil.org/about-vitamin-d/am-i-getting-too-much-vitamin-d/

“Taking 50,000 international units (IU) a day of vitamin D for several months has been shown to cause toxicity. This level is many times higher than the recommended dietary allowance (RDA) for most adults of 600 IU of vitamin D a day.” – http://www.mayoclinic.com/health/vitamin-d-toxicity/AN02008

Where to buy

Our Vitamins & Minerals (Suppliments) section within our Helpful products section has more information on Vitamin D and Calcium in general as well as some good places to buy supplements from.

Further Reading

Symptoms & Diseases Associated With Vitamin D Deficiency on drfranklipman.com
Vitamin D Deficiency on webmd.com


Well its not Addison’s then!


Short Synacthen Test

As promised this (Short Synacthen Test) is the name of the test I recently had to check for problems with my Adrenal system that I had forgotten the name of in my previous post about it.

My Endocrinologist ordered the test in response to some things detected in my my blood and basically I believe its test for Addison’s Disease. You have a blood test the an inter muscular injection of Cortisol and then another blood test either 30 minutes or 60 minutes later to check your body has responded correctly. I believe there is a “long” version of the test where blood is taken multiple times in the 24 hour period after an injection of Cortisol.

Addison’s Disease is one of those conditions that could be responsible to Fibromyalgia Symptoms and I would imagine there are people that have been diagnosed with Fibromyalgia who actually have Addison’s Disease. In my experience I have heard about a lot of people diagnosed with Fibromyalgia only to find a few years later that it is actually something else they were never tested for. Again my opinion is that Fibromyalgia doesn’t actually exist BUT its a dumping ground for people with similar and genuine symptoms that can not be medically explained either because things have been missed or because medicine can not explain what’s wrong. I believe this is why there are a lot of people in constant pain being labeled a “Fibromyalgia” sufferers and whenever a treatment or medication is trialled only a few benefit because there are actually a multitude of different reasons why a person could have “Fibromyalgia” symptoms.

Short Short Synacthen Test on patient.co.uk
The symptoms of Addison’s Disease according to the NHS


Looks like another dead end

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)


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