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

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.


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

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I thought I would share another freebie that has been brought to my attention. Skin complaints often go hand in hand with Fibromyalgia, CFS & ME as we seem to be super sensitive everywhere else why shouldn’t the bodies largest organ have its fair share of problems too?

This skin lotion may be worth a try. As I say with all freebies I am not affiliated with this company in any way, nor do I benefit from anyone taking up the offer. I also always mention it isn’t really free, its a trade: Your details for a free sample, so consider if it is worth giving away your personal data before you scramble to fill in the form. If anyone has any success with any of these freebies please let me know as I can share it with everyone through our helpfull products section.

A personal update from me: The past month has been a big battle for me, I can not pull my sleeping back round from my usual “awake midnight until 6am and sleep the rest of the time.” This means I’m almost always asleep when anything is actually going on in the world and when I’m awake I am totally fogged out and next to useless, sitting up and writing seems a world away at the moment. I am also trying to reduce my morphine intake as over the summer I threw away my 1/3rd reduction I managed last September to May and shot straight up to 100mg+ a day. So apologies to you all for no posts and to people who have not had replies to emails, its nothing personal, you have just emailed a “fibrozombie.”

Click here to go to their site for the free sample


Personal Update

I just thought I would do a quick update as I have not been able to post for ages. At the moment it takes around 7 days to recover if I spend part of one day out of bed. My body freaks out so much, its like it thinks I have run a marathon and had a car accident on the way back or a similar experience. The first thing it wants to do is pull my sleeping round to sleeping all day and being up all night, its like my bodies default setting and I have never learnt how to reset it. This means I’m often awake at night, in pain and its almost impossible to think. Hence why I have not managed to post or communicate for a long time. I thought I better say something so you know why I have not been able to respond to messages, share things on Facebook/Twitter, or write any articles recently. However I am still here!

If anyone has had the same problem with their body clock and managed to resolve the issue please get in touch. Its most certainly a sleep disorder, when I’m not “recovering” fro, being out of bed or before I became this ill I was exactly the same. During the day I was tired, my body ached and my brain just didn’t work, to call it a fog feels like an understatement. Yet at night I felt awake, in control of my mind and body and ready for anything! I was the exact opposite of my colleges who liked the day shift and hated the nights, I would have elected for permanent nights if I could, I could patrol and respond all night long, much to the annoyance of colleagues at the time. It was no surprise I couldn’t hold down a shift pattern down for long really. Now it feels like I’m on a different planet, every day I’m asleep in bed and every other night I’m wide awake, full of aches and pains while everyone is asleep, its ever so isolating. My daughter has woken up in the night twice on the run, its the only time I get to see her. Its bizarre but I almost want her to wake up every night in her cot and ask to go to the toilet as its the only time I get a Daddy cuddle from her to keep me going for the next 24 hours. However I’m worried it might become a routine for her if she realises she has found one way she gets to see her Daddy, for the rest of the time all she can do is gently open the door to see Daddy asleep, all day, every day, after every day! Bless her, it sucks, I really must figure out a way of rebooting this broken exoskeleton I was issued at birth so I can change the BIOS setting back to “sleep at NIGHT!”


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

My current health

Firstly just to let you all know I’m going through a tough time at the moment health wise. This time of the year is so busy for family birthdays and other events. I try my best to attend as many as I can but I dread to think how much morphine I consume to do so. More regular visitors may know that I am morphine dependent and have been trying very hard to decrease my overall use of the drug even though I rely on it to just get out of bed. Therefore I have either been considerable amounts of it out of bed, recovering in bed, resting before getting of of bed or basically in a zombie like state and a combination of all of the aforementioned states.

Due to this I have not been able to write content as often as I normally do, I’m not sure many of you hang on my every word but apologies for the lack of new content over the bast few weeks. As always I have loads of ideas for posts and a huge list of things I really want to research. Some of these are on the coming soon page but even that has been a little neglected of late. However I have come across some little gems on twitter so please follow me there if for some strange reason you want to hear more from me.

I have also had some amazing experiences with my daughter and friends recently. I managed for the first time to take her swimming with help from friends and my other half, its the first time she has been and she is 2 and a half so I’ve been trying to take her for some time. I went with one of my dear Fibro friends and allies who I am sure never thought the day would come as I’ve had to cancel on her so many times, but alas I finally made it. It was a private pool and was the first pool I have got into where I did not feel cold, obviously I can’t swim anymore but I did some gentle walking in the pool while getting my daughter water confident. She took to it brilliantly and I’m trying to resist the temptation to describe how she took to it using a well know phrase about ducks and water! I used to be such a strong swimmer and I am so glad she shows the signs of following in my footsteps with that regard. I also took her, again with help, to a local open farm which was the best experience of my year so far. Its a great place and you can literally spend the whole day as there is so much to do and hundreds of animals to see, pet and feed. We went with a dear friend and her son and daughter, the kids loved it and I am very lucky to have such lovely children that bring me so much joy. It took me a week to recover but I would do it again in a heartbeat, I now have the joy of editing some amazing photographs as well, which is another interest of mine.

A cracking little Fibromyalgia Blog

This morning I came across an excellent blog from a young girl in Essex. Someone on a forum shared her post which was written as a letter to Fibromyalgia as if it were a boyfriend and was entitled “Lets break up…..” This was such an inspired post, she is such a talented writer who conveys the very essence of what it is like to live with Fibromyalgia as a young person. I’ve only managed to skim the rest of her blog titled “The Fibro Effect”. You really should navigate your browser there straight away as your in for a treat, I can not wait to read more on her website. Please also share this yourselves on Twitter, Facebook, Blogs and Websites. This are really hard to find little gems on the Internet and we all have a duty to promote them not just for the writer but for the people that could benefit from reading such creative and talented writings.

I hope at some point to make contact with the author so I can tell her how good her blog is and do anything I can to support her. I will however, draw this to a close as my lovely daughter has come through and is sat on my bed with such a look of joy on her face as she has found me awake, her words were “I thought you would be asleep Daddy” so on that note my attention is going to turn to my beautiful little princess.


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!

Well its not Addison’s Disease then, as I’ve had the results from the Short Synacthen Test.

It is a little disappointing as for me Addison’s would have been a firmer diagnosis for me and held better news in terms of treatment and prognosis. It would have been nice to have the knowledge that my condition could be treatable after all and that I had prospects of a normal lifestyle when under control but no such luck.

Every year there seems to be a new possible diagnosis that would explain all of my Fibromyalgia symptoms but I did have more hope for Addison’s as the symptoms were very very similar down to cravings, salt etc.

Fibromyalgia it still is then for the time being, and has been since 2007.

Also my MRI results came back for the non contrast enhanced images of the pituitary gland! After having my fingers crossed the image WAS clear enough to be seen and no structural abnormality was found. So at least we know that any testosterone trouble isn’t a sign of something more serious. It also seems like they didn’t test my blood for Testosterone while I was having the Short Synacthen Test (which is great when your deliberately reducing the amount of blood tests needed!) so I’m having it checked again before going on Testosterone Replacement Therapy.

The Testosterone Replacement Therapy will be in the form of a gel and not involve needles so we don’t have a risk of my body going into shock and apparently the gel is just as effective. My only slight concern is my sensitive skin but we will just have to see, my BuTrans patches are making more and more mess each time and I think my skin is having a strop about them now so I’m going to have to look into an alternative for that too.

Anyway that brings you all up to date with my treatment and investigations, I’m back in the Fibro camp so I suppose the good thing is that my web address doesn’t need changing and I’m not going to be turning my back on any of my fellow Frustrated Fibro’s anytime soon! I must start to look at a way of presenting alternative diagnosis pathways on this site for you all as I’m convinced plenty of people with Fibro may have something awaiting discovery and perhaps a Short Synacthen Test may prove positive in some cases of Fibro too.

Links….. Read more about: Addison’s Disease, Short Synacthen Test and Low Testosterone

Next up….. The “Fibromyalgia Blood Test” is receiving quite a bit of criticism so if you have any opinion or information on the matter please email development@ or tweet @My_Fibromyalgia


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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