Vicsta's Journal

Things have been really weird for me the past few months. I shall explain...

In May/June I went to see my GP as I was beginning to get concerned that things were not right with my health at all. For about hmmm... a year and a bit, I had begun to suspect that there might be something else wrong with me other than M.E. due to weird sensations and strange feelings I was getting.

This is a copy of a post I made on a forum (I have no energy to re-write this):

As I had been progressing in my job (in 2008), I had become increasingly unwell to the point that I was incapable of staying up in the evenings or in the day at the weekend. I would come home from work and go to bed immediately after dinner, then spend all Saturday in bed and all Sunday morning, reserving Sunday afternoon for doing washing etc. Close work colleagues started to ask me if I was ok and I began to feel as if things were really ‘not normal’. I just wanted to sleep ALL the time. I was working overtime at work to get my clients Tax Returns done and I attributed the tiredness to my M.E. getting worse as a result of over-working. In the back of my head, I felt as if the complete exhaustion and sleepyness were not really consistent with my experience of M.E. - somehow (even thought they sound very M.E.-like) they were just not quite the same... they were actually worse, which I had never thought possible!

I  also noticed that I was still gaining weight (was by now 2.5 stone heavier than in 2005) and seemed completely incapable of stopping it, I was having terrible irregular periods with bad PMS, horrible nightmares, felt very sluggish, had awful IBS/constipation, was sweating like a pig in places that I didn’t think it was lady-like to sweat (and it stank! TMI!), hair still falling out, face bloated, facial pain driving me insane… you get the picture.

Around this time my boyfriend (who is not very tall) decided to measure me as we were arguing about how tall he was. I measured 5’4 ½ inches. I am not that tall – I have always been 5’3 ½, to the amusement of my family as they are all tall. We laughed, thinking how funny it was that I had finally grown and my mum said: That’s why you have been sleeping so much and feeling so tired… you’re growing like a teenager. None of us ever thought about whether it is possible to grow as an adult!

In August 2008, I made a decision to hand in my notice as I could no longer cope at work. Since leaving I have been without an income and totally dependent on my parents, which has been incredibly hard on me mentally and emotionally. Around the beginning of the year, I realised my tongue was becoming larger as my teeth were pressing on the edges of it when I slept and it was hurting when I woke up. I waited to see if it would go down and it didn’t… I felt it was getting worse. I went to see the GP in May/June to say that I wanted to have some tests done because I wondered if something was seriously wrong with me as for some time now I had felt different to what I termed: the usual M.E. feelings. I wondered if something was wrong with my thyroid or hormones. I told her about my swollen tongue; she never asked to look at it and didn’t seem bothered by it. She ordered me a serious of tests and at my request agreed to refer me to the CFS (M.E.) clinic if my blood test results came back ok. I did not find her overly helpful to be honest. The receptionist told me the results came back ok and I was eventually referred to the CFS clinic with a September appointment.

In August, I came down into the kitchen one morning and noticed that I felt taller as I could see and reach things I could not before, so I asked mum to measure me. I am now 5’5 inches tall. Mum started to question this – asked me if my feet and hands had grown. I realised that in June I bought a pair of shoes, by mid-August I could not fit them. I went out for the day, took my hat – it no longer fits. In winter ’08, I had thought that my gloves had shrunk, I realised they had not, my palms had instead gotten much bigger and I now have one hand span that is slightly larger than the other – meaning I can now reach more than an octave on the piano for the first time in my life with my left hand. I began to feel very concerned. I started to do research on the Internet to try and work out what could possibly be wrong. There are not very many things that involve a swollen tongue and most likely candidate seems to be thyroid or Acromegaly. Acromegaly is caused by a type of brain tumour which presses on the pituitary gland and causes it to produce too much Growth Hormone (and sometimes causes it to not produce enough of other hormones like estrogen, TSH etc). I decide to wait to see the CFS consultant as I found the GP to be so difficult and not interested in me that I couldn’t face seeing her again with my list of strange symptoms.

I went to the CFS clinic appointment and was asked to rate my pain… high! I was asked my height – explained that I had grown… slightly raised eyebrow! Went in to see the consultant… was eventually asked why pain level is so high as was inconsistent with M.E. patients in their clinic. Explained that I thought it was because I am ‘growing’ and my joints – particularly wrists, elbows, ankles, and knee - plus my lower back, feet and hands hurt me terribly. The consultant started to ask me questions – what did I mean I am growing? I explained… height, feet, hands, tongue, head etc. She commented that I was speaking with a lisp. She told me that she does not think my current situation is M.E.. She thinks that I may have M.E. and something else or that I may not have M.E. at all! I find the idea that I may not have M.E. slightly hard to digest as I have lived with it for 18 years. She said that she thinks she knows what the ‘something else’ is – that it is to do with my pituitary, that it is serious and that I need to be referred to an Endocrinologist. She said she would write a letter to my GP and ask her to refer me. I feel as if a weight has been lifted off me because for the first time in my sickness journey (especially as an adult) a medical professional has finally listened to me and not treated me as if I am making things up!

2 days after my appointment, I received a copy of the letter sent to my GP. The CFS consultant outlined my non-M.E. symptoms in no uncertain terms. I felt very happy that I would be getting a referral. Mum took me on holiday and we were both assuming that all was well with the referral being in progress. My feet continue to grow and she has to buy me a pair of size 40 sandals (originally my right foot was a 37, left a 38). My feet have always been wide-ish, but now they are so wide, I cannot easily get them into any shoes in the shoe stores.

Came back from my wonderful vacation where I managed to actually forget for the most part what is happening to me, except for a re-emergence of my Trigeminal Neuralgia, which for the most part has been under control. I am sad to see that my feet are continuing to grow. I am feeling so exhausted especially in the morning and can sometimes see the growth of my feet overnight, which in a freaky way kind of fascinates me. My feet are starting resemble a ‘flipper’ in shape. I am disappointed to find that I have no letter from the hospital re: an appointment. I decide to call the doctor’s surgery to ask if I have been referred. I have not. The receptionist lies to me and claims to have only just received the letter. I tell her I know that is not true as I received a copy on 11th September. She then says that the GP has been ‘away’ and finally tells me that I have to go see the doctor about it. I feel frustrated that no one contacted me to tell me this; I am awaiting a non-existent hospital appointment. I come off the phone, feeling very angry and have a teenage temper tantrum to the amazement and astonishment of my parents. I don’t know what to do with myself or my emotions. I don’t know who to turn to for help. I feel as if I want to die rather than face this situation. I don’t even feel like myself anymore… I look in the mirror and I seem so bloated and ugly. I don’t think the receptionist or the doctor understand how distressing it is to see your feet grow, your tongue grow… to spit when you eat, lisp when you talk and see yourself with a big protruding lower lip because your tongue is pushing against it.

I went to see the GP today. I said that her receptionist had told me I had to come and I explained myself all over again with the symptoms and the whole CFS clinic scneario. I tell her that my weight is out of control, that I am eating exactly the same as normal, yet since I last saw her, I have put on around ¾ of a stone to 1 stone in weight – not sure as have given up weighing myself. I think in my anger I have found some assertiveness. I took a bag containing shoes and sandals, a hat, 2 rings, and my gloves that don’t fit. I have also printed out the symptoms of Acromegaly and ticked off the ones that apply to me – which is nearly all of them. I plan on using the print out and the props if the GP doesn’t want to refer me; I don’t need to. She refers me. She does not want to say what she thinks is wrong, except to say that she thinks my Growth Hormone levels are ‘a bit high’ and that this ‘may or may not be’ the case. I ask her how long I will have to wait to hear from hospital and she tells me: 3-4 weeks.

So now I am waiting. I want to sort this out. I said to the GP, if this is not a case of GH being too high, you’d better be able to stop my feet growing… I never realised how exhausting growing feet and other bits could be! Plus, having no income, I cannot afford to buy another pair of longer trousers and another pair of shoes!

In addition, the deterioration of my health and the fact I realised I would most likely be absorbed with trying to cope with whatever hospital appointments and treatments I may have to have in order for them to work out what is wrong and stop me from growing, has meant that I had to abandon my plan of studying my Open University course. I really wanted to start that this autumn, but it is simply not feasible. I am still left with my website I am developing and I run a Ning community for women interested in cosmetic hair loss options, so there are positive things that I am doing to keep myself busy.