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Doctors, Hospitals and No Success.

I decided I think I should explain exactly what I have been through with the doctors and hospitals including treatments.

As I explained in my post 'The Past 3 Years...' this all started just over 3 years ago now. I started having flu like symptoms just after Christmas 2010 and after seeing the doctors every week I was finally tested about 5 weeks later for Glandular Fever, by this time the doctor said the virus would probably have left my system so my blood tests all came back fine. Unfortunately there was never a definite answer for this mystery illness that started these long, long years. After finally going back to college and completing my A Levels and having my 18th birthday in June 2011 I went back to the doctors after the cold, blocked nose and coughing symptoms had gone but left me still aching all over, mainly in my legs. 

At the beginning of August 2011 I went to the doctors AGAIN and I was sent to the 'GUM' department of the Princess Royal Hospital to be tested for STI's. I had never been so embarrassed in my life and even the doctors there didn't understand why a GP had sent me, they carried out all the tests anyway to prove I didn't have any and everything came back negative. As I was now getting really bad stomach aches as well as the pains in my legs things were just getting worse and I was given tablets for Gastroenteritis which didn't help. I went for a private ultrasound to check everything was okay with my stomach which they said it was. I still took myself off to Leeds Fest that year as I didn't want to miss out on anything although with the tablets I couldn't drink anyway but I have now stopped drinking as I have found that it makes the pains worse and also my body also feels hungover daily so I don't think I could handle the added extra pain. 

I managed to go to Florida with my family, but found it hard to keep up with all the walking around theme parks and standing around a lot. When I got home I was thrown straight into Uni as it was only days later that I had to start. I found the whole process of commuting too much that I had to get my mum to take to me Manchester on my first few days. I finally got the train and ended up standing up all the way there which threw me into a panic attack. When I finally got home I decided I couldn't handle everything as I found concentrating hard with having 'brain fog'. 

We went back to the doctors AGAIN and AGAIN and a GP finally mentioned 'Fibromyalgia' as my mum left me to talk about Anti-Depressants as my mood was getting worse and worse, my mum googled Fibro and decided we should get it diagnosed properly if this is what the problem was. Luckily my mum and dad sorted for me to go see a private doctor in Elland to get things moving quicker. He diagnosed me with Fibromyalgia and M.E/CFS. Finally we were getting answers, only we discovered that there was no known cure or cause for both illnesses. 

We spent the next few month back and forth to the doctors for different types of pain killers. I was first of all put on Amitriptyline which the private doctor said I was taking enough to knock out a horse, but this didn't have any effect on me. I went back to unfortunately see the same doctor that sent me to the 'GUM' clinic. I was still suffering from extreme stomach pains and thought they could at least help me with that so I focused on telling her about that pain as you only get 10 minutes at my GPs which with my list of symptoms and problems is nowhere near enough time. I thought if at least this was sorted then that was one less thing for me to deal with. She had the same idea of sending me to the 'GUM' clinic claiming that the clinic might not have tested it properly, even though they test it when you are waiting and then they test again within 2 weeks. I felt so humiliated and annoyed, I just said I would go and left to my mum in the waiting room who ended up shouting at the doctors and demanding to see another GP. Thankfully I have never seen this GP again. 

Although I was sent to another GP which they did say the other female doctor was in the wrong, they still had no answer for me. I was then sent for my chest pains for a chest X-ray where they found the lump on my shoulder wasn't something broken or a cyst, so I was given some cream for Costochondritis and an inhaler.

Up until April 2012 I spent nearly every week in and out of the doctors with no answers at all. I went to Physio in Halifax which they arranged for me which told me that when I get my volunteer job I had applied for to go back and see him, which made no sense to me or my mum. Seen as unfortunately my anxiety took over and I never went to work there as I didn't want to let anyone down when on days my pain was bad I couldn't turn up so I decided to start making my own cards and gifts to sell when I was feeling up to it. 

I started seeing a private physio in about March 2012 doing the Perrin Technique, and type of physio tried and tested specifically for people with M.E. It meant involving a lot of hard work and having to do some at home 3 times a day. 

I was also sent to Seacroft Outpatients to a group where they try to tell you about techniques, diets and stories about people with M.E. It was good at first and then I went on holiday to missed out on 3 classes. I still went after but still nothing helped and what they said weren't things I hadn't already tried. 

By September 2012 I had had every blood test possible and everything had come back fine, which is apparently normal with people with M.E and Fibro. Still nothing worked, I had been on Amitriptyline, Gabapentin, Fluoxetine and many other pain killers and anti depressants. I had applied for a place at Uni in Huddersfield but I still wasn't up to it. I had been to Florida again with my family for our Summer holiday only this time we had to take me a wheel chair as I found even walking to the gate for the plane tiring on me. For me I could walk around all day if I felt well and I do have good days, but if I was to do that I would be tired and in bed for 3 - 4 days, we thought that this would be a waste of a holiday if this happened every time I wanted to go out so decided the wheel chair was the best option. I don't mind using the chair as we can get on theme park rides first and it is nice to have a seat but then you get people looking at you, especially in Florida theme parks feeling really sorry for you and I found standing up and walking around for a bit so I didn't stiffen up awkward as people would look at me with disgust as to like 'why is she in the chair if she can walk?' Although sometime after sitting down for so long your legs do go to jelly and feel a little numb so I did look like Bambi. 


Unfortunately in November 2012 I ended up in A&E one morning because my pains were that bad. They used gas and air, which didn't help and I have decided I am never giving birth unless I get something stronger! Finally the pain calmed down using co codamol to how I guess it normally is although I was even more exhausted but I was discharged and sent home.

After getting home and back to the private physio my mood was so so low I gave up as I gave up on everything. I think this had been my lowest point by December 2012. I was prescribed sleeping tablets but this just made me dizzy before bed which everyone found so funny watch me falling over and attempting to get into my bed, I suppose it did improve my mood before bed, but they still didn't help me sleep. My pains weren't getting any better, I was now in bed up til 3pm some days and having to use a wheel chair. 

We went back to the doctors again in 2013 . I was sent to a Rheumatologist who just sent me to have all my bloods again as she had a copy of my wrong bloods and told me my Vitamin D was too high when it was actually too low. She also had a very strong European accent so me and my mum found it hard to understand her and she found it hard to understand us, she discharged me after diagnosing me with Joint Hypomobility.  I was then sent to physio again at Huddersfield Royal Infirmary. It started off not helping at all but then I was offered Hydrotherapy. I found the physio too easy to do in water and found it hard when the physio didn't understand M.E and Fibro and in the end my body issues didn't help so that was another treatment fail. I decided to be referred to a Health Carer who came to my house every week and then monthly towards the end of 2013. I found her the most helpful of all as she had been through similar illnesses and was now helping others, I was better for me as I didn't feel my time was wasted as she knew exactly what M.E and Fibro was. She also seemed like she wanted to help. She set me tasks to do each week which also was to help not only with the pain but also my depression and anxiety. I found most of it helpful and I did leave the house more but the pain was still bad, NOTHING SEEMED TO WORK!

I was THEN referred to the Pain Clinic in the new Calderdale Hospital in Halifax. Me and my mum didn't really go with a positive outlook on it as our appointment had been pushed back that day and then the doctor was running 2 hours late as well. We were finally seen and he was the best doctor we had seen, he promised to refer me to a M.E physio which was the best news but on top of that prescribed me with Duloxetine which is known to help people with resetting there nerves for people with M.E as the reason for the pain is that the brain isn't been sent the right messages from the nerves. I was also told I was going to be prescribed Melatonin which I wasn't and ended up buying it in America where you can buy it over the counter. These did help me sleep in Florida, which again, I was back in the wheel chair. I went back to the pain clinic in September 2013 where I saw the physio which told me I was already doing everything I should be doing like using the Tens Machine (Picture) so sent me on my way. 

Up until Christmas 2013 I didn't go back to the doctors again. I was still getting the really bad stomach pains and found this the worst pain now. Although I had pains all over my body and problems with sleeping, I found this the worst at the time. I went back to the doctors where I asked to be tested for Endometriosis as I have spoken to people and read other peoples stories saying they had M.E and Fibro and also have Endo. Even though I have most of the symptoms they still won't test me for it saying how rare it is at my age, which from what I have seen, it isn't and who says I can't be that rare one. 

We assumed that we would still be hearing from the first doctor from the Pain Clinic but we didn't hear anything until they had the cheek to send me a questionnaire in the post in January 2014. My mum ended up shouting down the phone about how fed up we both were with them and then I saw this same doctor in February 2014. I am now waiting for acupuncture and an anesthetic infusion which hopefully should help if they ever get in touch. I have also been referred to see a Psychologist in May 2014 and I'm now taking Citalopram.

Unfortunately none of the pain or my mood feels better YET and I'm sure I'll find something that works in the end. I'll just have to keep trying anything and everything. I asked Santa for a new body this Christmas but it looks like the little Elves can't make them, maybe next year. 

I hope everyone understands this, I know it's long but I felt I needed to share the whole story of the past 3 years with the doctors and hospitals. Please if you are reading this and have M.E or Fibromyalgia, please don't feel negative about everything I have said, things that haven't worked for me might work for you and hopefully your relationship with doctors and hospitals won't be so frustrating. 

Natasha xo

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