hospital incompentance!!

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hospital incompentance!!

Postby MissChris » Fri May 10, 2013 10:47 pm

Hey again everyone :)

Just have to get a bit of a rant out - why is it that when we have FM we seem to have half a dozen other conditions just to make things even harder?? Isn't it enough that we're in constant pain, constantly tired, constantly struggling to follow a simple thought process?? Why is it that supposed health professionals seem to treat us as either fakers or unimportant??

I have been rushed into A&E half a dozen times over the last few months with crippling stomach and abdominal pains - each time it has got a little bit worse. Started with gas and air. Then a paracetamol and tramadol drip. Then 10cc of morphine. Then 20. Then that doesn't even take the pain away and they cant give me anything else.

My doctor had to ring my hospital and give them (a rather strongly worded!!) dressing down as every time I was admitted they simply said "oh you have fm? That's what the pain is then." The first time I was left 7 hours without pain relief and I was literally in screaming agony!!

The hospital never sent me for any scans, any xrays, any tests while I was admitted. they just told me to go back to my doctor when I was feeling up to it.

Well the last time I went in - again in screaming agony - my partner had to fight to get me sent for scans/xrays. I was struggling to breathe, my partner who is a registered nurse tried to explain that my diaphragm had gone rigid meaning I couldn't draw in air - meaning I needed looking at immediately. The nurse just rolled her eyes and said I was panicking and hyperventilating. She then proceeded to scream at me "Slow down your breathing or you will pass out!"
She was, I might add, shouting each word slowly as though I was either unable to understand English or deaf.

Well, my condition got worse. my heart, already pounding with the level of pain, was struggling so hard I passed out. The nurse (I have no recollection of this, but was informed by my partner and the patient next to us) then shouted at me "I told you!" And started walking off.

it took my partner grabbing her by the shoulders and forcing her to look at my stats ( I was wired up to check my heart rate and blood pressure) for her to realise my blood pressure was a 176 over 98. I was in hypertension. I am 23. I have never had blood pressure issues. If she had walked away I dread to think what could have happened!

Anyway, after 20 minutes on oxygen and morphine I gradually came round. the doctor sent me straight for a chest xray and ultrasound. My chest was clear thank god. Luckily the lady who did the ultrasound actually listened and scanned all of my stomach and abdomen. And low and behold - there is a mass across the lining of my stomach.

So now I have to go and have an endoscopy which will find one of the following things -
a) inflammation on the stomach lining that may be treatable with antacids and strong antibiotics
b) inflammation caused by a bleeding ulcer. This may require surgery.
c) A peptic ulcer. This will have to be biopsied. If a virus called H pylori is found, antibiotics should help. If not, there is a high chance that the mass could be a form of stomach cancer.

Now most stomach cancers are picked up on in stage 3 - which is very hard to treat, requiring chemo, radiotherapy and sometimes removal of most of the stomach. The reason the cancer is so progressed when diagnosed if because symptoms are usually very general - weight loss, lack of appetite, sickness for short periods.

Now if my symptoms had been the above and it was missed then, yes, unfortunate though it is, the hospital cannot be blamed. However, if it does turn out to be cancer and I have been admitted 7 times with screaming pain before I even had a scan purely because I also have FM.....

How can it be common practise for our condition to either be summarily dismissed as non existent or for separate and serious illnesses to be ignored purely because it is 'easier' to say it is FM and throw us back to the GP???

My GP is so furious about this that he is personally attending my result consultation to make sure the right information is given. He has also already filed a formal complaint about the A&E staff who were involved in the way I was dismissed. Thank god I have such a good GP!

But the fact remains, if I have this terrible and life threatening disease how the hell am I supposed to try and cope when the people who are supposed to be there to help/treat and council me are so bloody useless! To say that my head is a mess at the moment is the biggest understatement. I have been unable to work the last 3 days as I go from ranting rage to dissolving into tears at any random moment. Luckily my manager has been brilliant and understanding with the situation and my partner, as always, is my rock - but regardless of their support I feel completely isolated. It is as though all the kind and supportive words in the world cannot break through this cloud I'm in. I don't know if I can cope with much more. :cry:

As always, thanks for listening everyone xx
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Re: hospital incompentance!!

Postby whoami » Sat May 11, 2013 1:39 am

Miss Chris........what a nightmare. I am so sorry. I am pleased your Dr is on your side and there for you. I hope that there is an inquiry into the hospitals attitude and treatment you received.

I am asking you not to think of cancer. It will make you worse, especially if it is an ulcer. There are so many other things it could be.
I can relate to some of your worries. I certainly can't know how you are feeling. Nobody can.
Your symptoms about your stomach, I have gone through the same thing. I just had a colonoscopy and a scope into my stomach as well as other scans. The pain in my stomach was unbearable. I believe you about how much pain you have with it. I am on Fentanyl, 100 times stronger than morphine and it did nothing. I am so sorry you have to feel that amount of pain.
I have had radiation for cancer, we are still checking to make sure it has gone and my thoughts were it was in my stomach (family history). I was making myself ill with worry.
Please, try not to worry, you have no control. I am sending you huge and gentle hugs.

Expect the worst in life you won't be disapointed and you'll be prepared!
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Re: hospital incompentance!!

Postby MissChris » Sun May 12, 2013 10:47 am

Thanks for the kind words :)

I have just had an endoscopy to check the inside of my stomach and there are no ulcers or tumours there! :D Cannot put into words how relieved I am.

Still have to check the outside of my stomach and the lymph glands in my abdomen...but feeling much more optimistic!

Have they found out the reason for your stomach pains? or have they just given you the pain killers to try and help? I hope they can find some cause and some treatment, I can only imagine the level of pain that would need Fentanyl!

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Re: hospital incompentance!!

Postby denys » Sun May 12, 2013 2:44 pm

So glad to hear you have no tumours present and :fingerscrossed: :fingerscrossed: for all further investigations I hope your concerns are taken on board by the staff but dont hold out any real hope for change across the board, FM is the cause of everything we suffer NOT :hugs: :hugs: :hugs: :hugs: :hugs:

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Re: hospital incompentance!!

Postby kazak » Sun May 12, 2013 4:36 pm

hi misschris

am so sorry to hear of ur awful treatment at hospital, but pleased no tumour have been found. i'm relieved that i had most my dx's b4 been dx with fms.(diabetic, gall stones, quincy, ibs,)the ibs really gave me severe stomach pains to the point of vomiting and sweating profusely then severe diarrhoea. have several things dx since but to be fair my gp is fab and listens to me. wishing u luck and gentle hugs
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Re: hospital incompentance!!

Postby wendielou » Mon May 13, 2013 10:16 am

Hey Miss Chris,
Thankyou so much for taking the time to write your post. I thought I was the only one who had suffered this way.. I had 7 hospital admissions in 4 months with extreme abdominal pain, vomiting and unable to pass stools or wind. This was a scary time for me as 3 years previous I had been admitted with the same symptoms and ended up extremely poorly having major surgery for a small bowel obstruction. During these past few admissions I have felt like I have not been taken seriously. All they ever do is x-ray once on admission and tell me my large bowel is full and that I am extremely constipated. Each stay has been approximately 10 days with the last stay being xmas eve through to new year. Surely being admitted over that period you would think that this must be a real problem as nobody would want to be in hospital over the festive period. Each time I either do not eat or barely eat depending on the pain. I struggle to get adequate pain relief as they feel that as " I only have constipation" that it does not require strong pain relief and also the pain relief would make my constipation worse. This I understand as I am a nurse who until Fybo worked at the hospital for 13 years. The problem being the pain is not constipation but as that is what shoes on the x-ray they will not investigate further. Not only this but not one professional either understands or appears to not believe on fybo and the level of pain relief required on a daily basis let alone with severe abdominal pain. I am still suffering but feel so embaressed due to the dismissal that I will not go back. My husband has said that if it get really bad we are going to drive a little further and attend another hospital and hope that I will be treated better. I will keep you in my thoughts and hope that you get a good outcome and recieve the care and attention you deserve. Please keep us updated. Gentle hugs xxxxxxxxxxxxx
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Re: hospital incompentance!!

Postby MissChris » Mon May 13, 2013 10:41 pm

Wendielou I'm so sorry that you had to be in over Christmas! :( Being in over the festive season is enough to make anyone feel down, but being in constant pain AND having the terrible hospital treatment....I hope this Christmas you have double the joy to make up for it!

It boggles my mind that they can feel justified in refusing pain relief as the 'condition' doesn't warrant it. Surely the patient can tell you whether or not it is warranted! Even if they dismiss the lack of appetite, a quick measure of your blood pressure would reflect the spikes of pain you're feeling!
One of my paramedics during one of my trips to A&E - he was an absolute star - told me that blood pressure and heart rates always reflects the pain when it hits certain levels. The A&E were refusing to give me immediate pain relief and said i would have to wait to be seen first. the paramedic called back to the ambulance team, got me back on the gas and air, hooked me up to the ECG and blood pressure monitor again. he said that it might take the edge of the pain and if my stats were already there to be looked at it might make the doctor take things seriously and take decisive action. Unfortunately he was wrong. As soon as he and his team left the nurses came along, removed the monitoring equipment and confiscated my gas and air. 4 hours later i got some paracetamol, to 'see me through the worst'.

I would think about submitting a formal complaint about your treatment and the way you are being dismissed. At the very least it might make them take further action or tests if its a registered case. I have a follow up appointment with my GP about my general FM management. I will ask him for further advice about situations like this with pain relief. He may have some ideas on how to improve things for you, I will keep you posted. xxx
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