ME sufferer

Diagnosed: 1993

I got made redundant in 1992 at the age of 37. Had the summer off and started working in the cough sweet and prescription pastilles industry where I was prod mgr. I started in Sept 1992.
All the time I was there I felt ill, I had to drive 75 mins each way on dreadful roads, left home at 5.30 and got home sometimes 8pm. I had stomach upsets most of the time and colds but worked through it like you do! The site was on a very steep hill and I remember thinking one day I would die if I had to walk up there again.

At the Christmas I very ill and eventually they diagnosed repiratory syncytial virus in Jan 1993. It didn't go. I spent the best part of 6 months in bed or at home. Got slightly better after that but was more down than up. My GP thought I had ME but kept saying, work through it, do lots of exercise you'll get over it. They sent me to a sports centre to do a fitness course but I went once and never again. It was about this time I saw the psych and he said there was nothing mentally wrong that feeling well again wouldn't fix.

Gradually I got a bit better and 18 months later I still couldn't go back to work so the firm dismissed me on grounds of ill health. I started making hats and was OK so long as I didn't over do it. I got a lot better after our girls left home and I was not driving back and forward between two houses all the time.

In Dec 1995 I was pushing the car on the drive as the starter motor was stuck and I put my back out. It sort of healed and then on Jan 2nd 1996 it got a lot worse. I had been seeing an osteopath and he refused to treat me. I could not get a docs appt for 3 weeks so b/f called the doc out. From that day I didn't leave the bedroom for a month except in the latter stages to crawl to the loo.

All that month they had tried to get me in hospital but there was a flu epidemic so whilst b/f could look after me they kept me at home.
He was signed off work to look after me by the doctor. I was allergic to virtually every pain killer they gave me. If if didn't come out one end it came out the other, sometimes both. The first week I remember very little as I kept having injections a lot of the time I was in so much pain.

We got into a sort of routine where b/f would wash me, give me meds and breakfast, put my salad lunch on the bed table with cling film on and go home for a few hours to sort the girls out. One was only 11. The nights she was due to stay at b/f's she slept on the floor in my back room and he slept in the spare bed. All night I had really bad sweats and b/f had to change the bed several times a night and my clothes. I think he used to grab a couple of hours sleep during the day.

Finally they got me a bed in hospital. A different doc came out from our surgery to get me admitted and he examined me differently and as he shoved my heel up to my bum something went click, I screamed and my back went back into place! I walked down the stairs to the ambulance and eventually got to hosp at 10pm as we had had a freak snowfall and the ambulance could not get up the hills. It was the 5th crew who had tried that finally took me. I got x-rayed at midnight, examined by the surgeon at 7am and discharged again at 8am as I 'had not broken anything'. What I had done was had 2 slipped discs one above the other which had trapped the nerves to my legs.

By the end of the February I was well enough to go out for short times.
My Mother decided to pay for me to visit my sister in NY so I went on 8th May. It was a nightmare I was there for 6 weeks and hated it, By this time I was really ill and in a shopping mall we all took our blood pressures for some reason and mine was through the roof. My nephew who was 8 then had had a rash and came home from school and said the teacher said he had 'fist' disease so his Mum took him to the docs. I went along as I had had a lot of what I thought were mozzy bites and they had made me very ill. They were not those but were Black Fly and they had had them that year the first time for yonks!

My blood pressure was still sky high, my heart was racing all the time, I felt so awful and the doc said I must not fly home at the end of the week. I went mental and said if I didn't get home I would die so he let me on condition I went straight to my doc when I got home and he sent a letter. He couldn't explain the extreme pain I was in.

Nephew meanwhile was dxd with Parvo Virus or Fifth disease. The next day I came out in the rash too. That is what I had and it causes arthritis and heart probs in adults.

When I got home I was ill for weeks and finally my doc said I had osteoarthritis and a very fast heart rate and prescribed beta blockers and amytriptyline. At that stage I was a bit overweight but not too bad considering I had had a virtually inactive life style for 3 years, round about 10st.

I first went to see a rheumy in 1999 after I insisted on some treatment for the increasingly odd symptoms I was getting and the fact I had put on 3 st by then. She suggested exercise and sensible diet (!) and said I must remain on the amy trip and I didn't know what else to think. She did put me on arthrotec which helped a bit.

My last visit to her was in 2001 by which time I had put on another 2 stone I told her I was desperate about the weight and all these symptoms. She then said 'Oh of course that's the fibro'. What Fibro? I asked and she said well you've clearly had it a number of years. I also had ALL the tender points, dry eyes and other stuff. She couldn't do much more about the fibro than amytrip and said I must do a lot more exercise. She did send me for an endoscopy which I had been begging my docs for for years as I had such awful heartburn all the time. I was sure it was the drugs. That was awful, I was allergic to the throat spray, they wouldn't knock me out and I ended up having allergy injections and a tranquiliser. They discovered I have stage 2 Barretts oesophagus which can develop into cancer if not checked up on. If it had been caught 5 years before when it had started it could have been prevented.

I was getting increasingly worried as my symptoms were worse and by now I had put on over 6 stone in weight. B/f was getting frustrated as he kept trying to encourage me and I was so depressed and he said it didn't matter but even when I virtually starved I still put on weight. My GPs all kept on about what I was eating whenever I mentioned it. In spring 2002 I had a dreadful session with yet another GP and he told me I must keep on with the amytrip even though I was now on a huge dose and it was having lots of other side effects.

By then I started researching amytrip on the net. One obscure paper I found said it should not be prescribed in that researchers opinion as it puts on so much weight and that weight is nigh on impossible to get off even when you stop the drug. I was so mad. I found loads of girls on the internet who had all had the same experience.

I stopped taking it immediately then my GP read the riot act as you should not just stop cold turkey. Within a few days I felt better except for the sleep so I started ZMA . My dry eys and dry mouth had gone too.
After I started the ZMA it revolutionised my sleep, even better than the amytrip. I was no longer foggy all day and did not find it hard to wake up. 4 years on I now am back to my old pattern of waking with the light as I had done all my life pre-ME. So in the winter I sleep a lot more than in the summer but somehow it makes me feel the same.

The Fibro got a lot, lot worse however and I was very stiff in the mornings so much so that I had to be up at least 2 hours before I wanted to do anything. I do stretching excercises when I first get up but some days the pain was too great to do much else. I also had increasing pain in my sacro-illiac joints which I ignored as I thought they would say 'weight' again. Then I had some strange things in my foot and they thought a bone had collapsed so I had it x-rayed and that lead to more x-rays elsewhere and they detected some abnormality with the bones at the back of my pelvis which I was assured was not 'weight' but some sort of inflammatory thing. I was also getting calcium bits building up in my feet and back.

I was told to up the arthrotec. This all came to a head when we went to Lefkas in 2003 and I could not walk very far at all without this cripling pain in my lower back. Also 2 days after we came back I broke 4 ribs leaning out of the window to rescue a cat who was stuck on the porch roof. I reached too far out over the cill and they snapped against the wood. I had to sleep semi-sitting up then and I found that all my hip and back pain in the morning was heaps better so I have slept like that ever since!

After the ribs healed I was then sent for physio for my back and hips but they couldn't find anything and said I was surprisingly supple for someone of my size (I did used to do aerobics 3x weekly). I also started getting a lot of pain in my shoulders which I was learning to ignore.

In 2004 I was finally referred to the pain clinic after I started seeing a new GP. She did loads of tests when I started with her to get her own 'take' on what was going on and she also could not understand why I could not lose weight after I had charted all my food for a month for her. The pain man was horrid and said he didn't even know if fibro existed but his side kick, a psych, said in her opinion I was so positive and was pacing well etc etc she thought I could benefit from some pain relief especially for the costachdritis in my ribs. They also told me I had been diagnosed with Raynauds 4 years before which I had never been told though I suspected it. I then started acupuncture which made me a new woman. I even lost 2 1/2 stones in 6 months which I have managed to keep off all but 6 pounds.

At the end of the accu course last Aug/Sept I was getting worrying pains in my shoulders and my hands were siezed up in the mornings. The accu who is really a physio diagnosed 2 frozen shoulders and said to see my GP. I did and she agreed. I tried some other anti-inflammatories which I was allergic to so went back to good old arthrotec. It did no good. By the time we got back from Greece in early Oct I could not open my hands for an hour when I woke up. I also had by then large lumps in the palms of my hands. I could not raise my arms above my waist and I was in a mess. I was also starting to put the weight back on and I was tired all the times, excessively so even for me.

My GP referred me to the rheumy again but I had a letter saying it would not be until March. I was getting desperate. I was seizing up so much I was unable to even have a drink unless I had a straw when I got up. I could not dress myself and even going to the loo at times was a nightmare. If we had to go anywhere before lunch b/f had to wash, dress and feed me before I could go out. I could not hold things and had no grip. My fingers felt like they would snap if I moved them. Funnily enough about the only thing I could do was type as it required such small movements and I could just do one finger each hand up and down movement, so I was on the net all the time!! Then I started getting electric shock type things when I could use my hands. If I turned a knob or tied shoe laces or even picked something up awkwardly I got shocks into my fingers. My hands kept going white and dead looking then sting like they were burned. My feet then started to go the same way and walking was like walking on pointed pebbles. I was also getting lumps on the soles of my feet behind my toes.

My GP sent me for blood tests and I had seen the pain people again but they could not explain it.

I took b/f to see the pain man again in September 2005, a week before we went to Greece, as he was so pompous and he was much nicer that time. He offered me more amytrip which I refused because of my weight. He looked me up and down then said Oh yes it can do that, bad luck. We just stared in disbelief as that was the first time anyone here had said that it was the cause. I am so glad b/f was there as I thought I was dreaming. I was offered more accupuncture which I started in May 2006, only an 8 month wait.

Then the blood tests showed an ESR which was through the roof and also a very high rheumatoid factor. My GP tried to hurry up the rheumy appt but couldn't; she tried to get me in privately but could not until the end of Jan 2006, so in desperation b/f came with me and he said he would pay anything, anywhere to get me to see someone. That's when I saw a private one at the end of November 2005 and who gave me the massive shots of cortisone, as a test originally, to see what effect they had. If it did no good then it was just frozen shoulders and carpal tunnel syndrome, if it worked it was a form of RA and he believed an aggressive form at that. I had a shot in each shoulder and each wrist.

Overnight I lost 7lb in weight so I must have been carrying a lot of water, I also could move better than I had for years. He wanted me to start plaquenil as a disease modifier but I needed baseline blood tests first.

Within 8 weeks it was all back again and I had not had the plaquenil, so when I saw the NHS rheumy in Feb 2006 I was almost back to square one. He went mad and said I must start the plaqenil that day if poss and gave me more cortisone but only in my shoulders as I could not move them again, my hands were marginally better. Once again it worked overnight. I asked him about my weight and said what could I do if I could not move. He said that in no way was the RA anything to do with my weight and to put that out of my head entirely. If I got treated for the RAt then maybe and only maybe would I be able to start any real excercise and then we could worry about my weight. Just carry on eating sensibly. I did actually feel a lot better when he said that.

Now I am on the plaquenil it is finally starting to work and although I get very tired if I overdo the symptoms are a lot better. The strange thing is the overall stiffness and back pain have started to go so I believe they were RA related rather than fibro or ME. I am starting to lose weight again 10 pounds in the last 5 weeks so I am getting there slowly now the cortisone is wearing off too.

My main symtoms now are brain fog, tiredness, aversion to smells, loud noise and bright lights, costachodritis, (that has never gone) pains in my large muscle groups when exerted. I still can not lie on my back or my right side as my right leg goes dead. I'm sure I have a trapped nerve but they wont investigate. I still have a very odd heart rate and though I have been tested several times I'm still sure there is something wrong. If I lie flat my heart races faster than ever and it is even worse on my left side. I am sure I have a problem with the mitral valve but the docs say there is nothing to refer me with.

My meds are plaquenil, arthrotec, pariet(for Barrets oesophagus)paracetamol, piriton (allergies/hayfever) atenolol (fast heart rate). Supplements ZMA, black cohosh, menopace.

I am angry at a system which just dismisses ME (and Fibro) and has meant that other illnesses have been ignored because I have this diagnosis. I also have so much anger for the system that caused me to put on all this weight and refused to believe that I was not just sitting at home eating chocs and all the other crap. And also because I got Barretts which would have been avoided if one particular GP had listened to me from the outset.

I am lucky that I have had such a brilliant partner / b/f through all of this. He has always strengthened me when poverty, trouble with benefits, doctors and just the ME itself have all made me distressed. Without him I would not be in such a positive place today.

I have had ME now for over 14 years.