latest update

Thank god its Friday, its seemed like a very long week and I am exhausted. Two Trips to the local hospital have wiped me out. Yesterday I had a three hour nap in the afternoon and went back to bed at 1730. I slept for eleven hours only waking up once at 2am when it started raining and it reminded me I needed to go to the toilet!

My fludrocortisone has been increased to two tablets a day as my blood pressure at the consultants office was 105/60. In the normal range but low if you take into account by weight, height and age. The consultant who is extremely funny said “your blood pressure has reached the dizzying heights of 105”. He would like me to go back onto mestinon regularly as it increases your blood pressure on standing, however he is doing some research to see if he can find a drug I can take that will help me tolerate it. I used to take propanthaline, with the gastroparesis this kind of drug is no longer allowed as it slows everything down. Mestinon speeds everything up digestion wise so its quite good for gastroparesis, I just find the side effects too much.

The consultant didn’t seem to find the idea of loads of physio and hydrotherapy such a brilliant idea. He told me my POTS was too unstable at the moment to be entertaining such an idea. He then dictated a letter to the Rheumy I saw Wednesday saying he must be involved in any plans she had. I did tell him that I felt she had absolutely no idea about POTS and was worried that in her ignorance she could do some damage.

Their two approaches are completely different, POTS man won’t allow me out of my wheel chair in his office. Rheumy lady made me walk the furthest I have walked in years causing me immense pain and shortness of breath. When I complained I was told “just because you are in pain it doesn’t mean its doing damage”. Tell that to my hips and back that have been in an elevated level of pain since you made me do that. At a cost of over £4 a minute she has not only hurt my wallet but my body too. I should have been stronger and said no, however non compliance never goes down well in the medical world. You become an attention seeker or mentally ill if you refuse to do something.

I have taken my pain killer cocktail today 2 Naproxen (250mg each), 2 paracetamol (4 hourly), 2 Tramadol (6 hourly) and I am still hurting. So the pain is at a five, my back has seized up and is going in and out of spasm. My wrists and hands hurt and my head is refusing to support my neck. I know I need to exercise to strengthen the muscles I’m not disputing that. What I didn’t need was to be forced to run a marathon on the first day. OK so it was a walk down the corridor but it felt like a bloody marathon. Not only that but she followed me so I couldn’t get back in my wheel chair the minute her back was turned which was the plan because I knew the amount of pain I would be in.

When I get pain like this its not only the joints but my internal organs feel like they have moved. Its a bizarre thing to say but its the only way to describe it. When my chiropractor used to manipulate my pelvis as it rotates of its own accord I was left with the same churned up feeling inside, like everything was in the wrong place.

My old chiropractor called Heather was brilliant, one of the nicest people you could ever meet. Unfortunately she moved her practice out of my town and now its too much for me to travel and see her. She kept saying years ago when she treated me that there was something very wrong with my joints, due to the way the manipulations never held and my back would just seize up so I couldn’t bend. She discussed it with her colleagues but they didn’t have the medical knowledge to know what it was. I brought it up with my GP at the time (the one my mum gave it to with both barrels) unfortunately he thought chiropractors were just one step away from witch doctors on the alternative medicine scale. So it went no further.

Since the EDS diagnosis all I have done is cringe at all the damage I have done to myself. I was incredibly active, much more active than any of my friends. I loved doing exercise video’s, running, walking, playing tennis and netball. When I hurt myself I would work through the pain. In 1999 I really damaged my back at an exercise class. We were doing the warm down and I was relaxing lying on the floor doing a stretch and then there was a massive crunch and I couldn’t move my legs. The crunch was so loud that several people sat up and turned around. That was the injury that really screwed up my back ……..done in the warm down. I had slipped discs before but this was something else. I tried to carry on but I couldn’t put my legs back flat on the floor when lying on a hard surface. I went to work the next day but came home a few hours later sobbing as the pain was so intense. I remember my sympathetic female boss at the time telling me to “suck it up and stop acting like a baby”. I was in agony and didn’t know what to do with myself.

My back has never been the same after that injury. The GP told me I had slipped a disc and to do some gentle walking. I have been left with bouts of nerve pain down my left leg where it burns or the skin becomes so sensitive I can’t stand anything touching it. I have been back and forth to the Dr’s telling them I am in pain and just got handed pills. I was around 25-26 years old and I guessed they just presumed I was young and fit enough to shake it off.  That’s over ten years ago and I am still suffering.

The EDS diagnosis has also made a lot of sense. Of course I knew that I had it, I’ve known for about a year after joining various forums and looking at the Beighton Scale and the Brighton Criteria. I had always thought I was a wimp when it came to the dentist, I would be pumped full of local anaesthetic and it would still hurt, despite the dentist telling me it couldn’t. I thought it was all in my head, that it didn’t hurt it was just my fear making it hurt. You will tell yourself all sorts of things if someone in the medical profession is telling you it doesn’t hurt.

So now I just await my torture sorry I mean physio appointment and see what they can do for me. Unfortunately it means more trips into the local hospital and more exhaustion, before I have even attempted to make my muscles stronger. Its a vicious circle but I need to do something. Even if the rheumy said she doubted that they would get my pain under control…..thanks for that love I’m 37 the chances are I will live until I am at least 80. So if I manage that I have another 43 years of pain to endure. I think I am just going to have to take it one day at a time!

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2 thoughts on “latest update

  1. Hi Rachel .. gosh you're having a bad time .. I hope you can find some relief somewhere along the line.

    If you have a chance have a look at this site and the press article – I found someone down here who does the technique and uses it on my mother when she visits.

    Janice has used it on other patients and people have said they've noticed their relatives reacted positively to it ..

    http://www.mtechnique.co.uk/bios/RJB-Bio.html

    http://www.mtechnique.co.uk/press.html if you look 2/3 down the page it gives a brief overview ..

    It is butterfly massage – so hardly touching .. but very effective ..

    Your husband and family members could learn it – perhaps via a DVD ..

    This may help somewhat by giving your muscles an extremely light workout – & I mean extremely light .. no movement really at all – but there will be some exercise ..

    Janice is still with us 3.5 years later! Helping my mother ..

    It's definitely something worth looking into I think ..

    Hope it opens up perhaps a door to help .. cheers Hilary

    Like

  2. Hi Hilary,

    Thanks for the info I will have a look into it when I am feeling a bit more with it.

    I am having to fill a load of forms in and its just making my head spin. So I have crept up to bed for a nap with the intention of cracking on with it again later.

    Thank you for your lovely comments and I have really enjoyed your posting on the Royal Wedding.

    Rach xx

    Like

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