I've Just Learnt The Hard Way To Listen To The Doctors.

[willows]

Over the past few months I have somehow become very laid back about my condition , and have now suffered one of the worst experiences I have ever had .

In the past when I injured myself or got a cough/cold or anything that most people without Pots would call normal , I on the other hand knowing how I can react to such mundane conditions was always on the alert for any 'subtle changes' or unexpected ' longer than normal healing times' but with all the excitment of the children's hospice I let my guard slip ..................and am now suffering the consequences of this , such a stupid thing to do , and one I will not forget in a longtime , especially the pain.

Let me start at the begining ;

A few weeks ago about 10-12 if fact , I was trying to come out of the bathroom and as I turned the handle I somehow managed to tear the muscle and damage the nerves etc at the base of my right thumb, this was painful at the time and very annoying because everytime I used the thumb I suffered pain shooting into the base and then after about a week or more this started to extend further up the wrist.

Thinking ' I'll just rest it more' I merrily carried on , and so did the pain until just turning the key in the car's ignition had waves of pain and sickness sweeping over me , and me feeling like I was about to 'hit the proverbial floor' .

So , after 6 weeks of struggling I went to see my own Doctor, he sent me for an xray ( which later confirmed I'd damaged the muscles etc) and at the time suggested I was put into a plaster cast so that I could completely rest the now thumb and wrist .

I thought about this and decided that it would be such a hindrance for me so asked the Doctor if I could have it strapped instead? my doctor sort of agreed and having searched around for something to hold the area's injured firm and still , he then suggested that may be I should have it plastered as he could find nothing to use .

Being me I said 'NO, dont be so daft , Mark and I will find something to make a flat base for me to be strapped to ' and so I've just spent 2-3 weeks being strapped to a small plastic reshaped ( to my hand ) chopping board, with the understanding that if the pain didn't easy off by this method I would have to have steroid injections into the thumb base and possible a cast after this for a short time ..................... now this is where the lesson is to be learnt.

ALWAYS LISTEN TO YOUR DOCTOR AND NOT BEEN SO SURE YOU CAN FIX IT MYSELF..................this is now tattooed across my forehead.

I went back to see my lady Doctor on Tuesday for a steroid injection as the pain had not eased and was getting worse at times.

Neither my doctor or I had any idea what was to follow and certainly I having had steroid injections in the past ( about 18 years ago ) had never experienced anything like what followed.

I had just one injection into my thumb base, felt fine and left for home , got home and suddenly felt very tired, extremely tired , so tired it shocked me and my hubby sent me looking very white to bed .

An hour and a half later I awoke ........................with the most excruciating pain in my right hand, thumb joint , wrist and up my arm to my inner elbow, so extreme was the pain that I rolled around the bed and was crying ............something which shocked both my husband and my son to see me do.

Hubby gave me a 40 mg Oxycontin tablet and my doctor was called , having listened to what was wrong she said she would be around in a couple of hours time when the painkiller had worked ............. but it didn't.

My doctor was called and came out to me , I was given an injection of morphine and 10 mg of diazepam and was told that the pain would now go off.............. but it didn't, in fact it had now extended up to my upper arm and I was as white as a sheet , still crying with the pain and didn't know what to do with myself.

After half an hour of trying to think of something my doctor gave me another 2 x 40 mg of Oxycontin to kill the pain ........... but it didn't and I was getting worse as the minutes passed , so much so that I was almost passing out with pain now.

So off to the hospital I went at now 9 pm in the evening for help , my own doctor was worried and so upset by what had happened to me , poor woman kept calling every 2 hours to check on me .

Once at the hospital I was given gas and air ...............thank goodness this helped a bit , and had a very nice unbelievably understanding doctor talk to me about what had happened , he thinks that my pots has spread into my joints and is somehow effecting them in some way that when the steroid was injected in instead of helping ...........it to attacked the joint which was why I was still some 9-10 hours after the injection rolling around in utter agony and still crying with such overwhelming pain like I'd never felt before , it was almost as if my arm was being torn off slowly a bit at a time .................I just cannot tell you what the pain was like , t was over the 10 score and all I wanted to do was hold my hand/arm to by body crying rocking back and forth ..............this was not a person my husband or son had ever seen before .

So having had more morphine I'm now in a full plaster cast from tip of my thumb to my elbow and will be like this for about 4-6 weeks ( yep, all though the HRH thingy ) the pain had almost gone , but on coming home at some 6 am in the morning yesterday I suffered huge bouts of vomitting and then upset stomach that left me feeling like I'd lost the day before , last weeks and last years contents of my whole digestive system.

I've now slept for some hours and am feeling more me ( whatever that is ) , my lady doctor was on the phone asking me to come into the surgery today , she is still feeling so guilty and upset by it all , but as I keep saying to her ' its not any one's fault , we dont know how my body will react to drugs now , its all just guess work ' .

When I go later today I think I'll take her some flowers to cheer her up , If you had seen her face when she came out to me you'd know why.

So moral of this is.................listen to your doctor, dont think you always know what's best for your body and like the boy scouts ' be prepared ' because anything can happen when you least expect it to , and I've just learnt it , the hard way .

Willows .........never again will I say ' NO, I'll sort it '

[MightyMouse]

I'm sorry to hear that you had such a painful experience. I am a little confused about how POTS can spread, though? Unless you have an autoimmune type of autonomic disorder? Maybe I missed something...

Anyway..., hope you feel better. Nina

[MightyMouse]

Oh... I just read through your signature and see you have rheumetoid, so perhaps that is what the doctor is thinking is the primary cause of your POTS and also explains it "spreading"? I'm just guessing here--haven't finished my coffee though, so my brain isn't working at full speed.

Nina

[pat57]

for willow

most people feel better after they get plastered.

http://www.answers.com/topic/plastered

[P SUDIK]

for willow

most people feel better after they get plastered.

http://www.answers.com/topic/plastered

Willow so sorry you had such a horrible experience,glad you are feeling better,Hugs Pat

Pat57,that's a good one !!!!!!!!!!!!!!!! Pat

[willows]

Honestly you guys

I wrote an email to my area manager for my charity just now and at the end wrote .............Ami a little plastered in a none alcoholic way

I went to see my own Doc today and she hugged me and gave me a kiss !!!!! explaining that in all the years she had been a doctor she had never seen anyone in so much pain and my colour .............well as she was calling the house every 2 hours to check up on me , it says it all she also said she was very worried and thought that hospital was my only answer , if your wondering why she didn't send me in first thing ????? well I hate hospitals for the simple reason that in the UK they have no idea what this condition is about , so in trying not to be ignored ( the nurses and doctors I might add ) they treat me really terrible , making out that I dont have things , like for instance;

My heart was really slow one day and I was getting chest pains and arm pains again , heart beat taken by doc 43 bpm ........... I was sent in for monitoring + care + drugs , when my heart beat went to 40 all the alarms went off ..............so the nursing staff lowered the alarm warning number to under 40 bpm ................so then they went off again as now my heart beat was 38 bpm and I was looking even paler than beofre they had given me the drugs to help ...........so what did they do ???? they disconnected the monitor as it would disturb the other patients

My husband went crazy and was shouting at the nurses saying that it was almost barbaric and possibly illegal to do such a thing to me , in the end I took myself home and had my doctor look after me again with extra drugs + oxygen and 2 hourly care from herself and her own nurses.

I've also been shouted at my am Army doctor ( we have naval doctors in our hospital to ) who asked me why I was in a hospital bed one morning after I was admitted the day before with angina and a heart beat of 35bpm , grey skin , sweating , almost black nail beds and an oxygen content of just 89% !!!! he checked my chart at the bottom of the bed and said it was obvious that the staff had written there figures wrong ..............again my husband went mad and almost hit the man but I got my own back on the major as I pulled rank on him , having called me Mrs .................-..............he had to apologise and speak to me in a civil tongue and then suddenly disappeared , again I went home to my doctors care .

It has now been discovered that my joints are all getting loose , which is why silly things like my thumb are causeing so much pain and trouble for me and why my hips keep moving out of alignment .

But I tell you guys, the pain I had from that one steroid injection will stay with me for the rest of my life , it was excruciating , and I always thought I had felt the worst pain imaginable up until them , ha , wrong , so very wrong .

Now my own doctor has said she will have to think very carefully before giving me anything out of the ordinary and definitely not another steroid ever , which is now written in red across my notes !

Well plastered or not I'd better go now as my necks killing me and my one finger typings getting harder and harder to do , look after yourselves , dont do anything I wouldn't do ( which means do what you like ) , bye to all Ami XXXXXX

[pat57]

so glad that's over!

[corina]

ami!!!

i am very sorry what happened to you! i have learned this same lesson some time ago, the hard way, like you did, so i do exactly know how you feel.

i have these episodes that i think i can manage to "do" things in my own (very slow) way, but every time i learn that i can't i do have peace with it now, but i truly don't know where this comes from. i should have learned by now . . . . . .

hope you will feel better soon.

btw how did mike do with his exams? i've been thinking about him as my oldest son had his exams as well these last two weeks. let's hope our boys (don't call them children anymore!!!) did well!

take care ami,

corina

[flop]

Oh Ami! ((((((HUGS))))))

I can't imagine how bad the pain must have been but I can imagine the horrified faces of your husband, Mike and the doctor. She must have felt dreadful for having caused you that much pain - I think that it was really sweet of you to think of getting flowers for her, show how much you truly care about others despite your own problems - you most certainly do deserve the HRH reception and recognition for your tireless work!

I'm not sure about the POTS spreading to the joints either, steroid injections are commonly used to treat inflammed joints from all types of arthritis including rheumatiod - it must have been quite an adverse reaction that you had.

Hope the pain has settled now and that the plaster cast helps sort the thumb in the long-term as I know you will be wanting to use it again as soon as they let you out of the cast! When you do get the plaster off ask if you can try a thumb spica splint. I had one after a scaphoid plaster cast then a futura splint (no good for thumb pain!) following an injury in a car accident. It is a neoprene wrist and thumb wrap with a springy metal strip along the lateral border of the thumb that allows you to move the thumb but provides support and stops you over extending the base of the thumb. I got mine from the physio at my local UK hospital (and really wish that I could find it as it would be useful to wear occasionally when that thumb plays up).

Take care,

Flop

[willows]

thanks guys for your replies, excuse strange writing as i am not a happy bunny having spent another 4 .5 hours at hospital this evening and am in 75% pain again as the first plaster cast was not the correct sort ...............

basically the thumb came away in my hand .............so had to go back only to be told that the nurse had not put on .the one you said flop , but a half open cast .

when they took it off............... the back of my hand, palm , up my whole thumb to the last joint before the nail , my wrist and then a 1-2 inch section running down towards my elbow on the inside of my arm was ; black, yellow, green and had blood patches and bleeding in it , that shocked us all ................and then the doctor and nurse went to move it again without pain relief , well ...............i swore out loud , something i very rarely do at the best of times . pain, pain and more pain again now which is why I'm up at 4 am and have been for sometime and typing this so very slowly with my left index finger only , i now cannot use the four fingers on my right hand without pain to ..............cross or what .

I've been able to sort my new outfit for the HRH thing , if you go to the Indian site called rupali , go to trouser suits and look at one called 'twinkle' its a white linen suit with a long jacket , which i got 2 sizes to big , the jacket has wonderful embroidery down the front . so i thought white trousers , a white sleeveless plain top , the jacket .one arm in , 1/2 done up and the other arm in my sling , a white hat and silver flat strappy sandals and shoulder bag .............which i have , it has to be cheap as i spent a lot on the extras for the other lot i cant wear and nothing else in my wardrobe will fit around the arm sling .

blimey better go so sore and tired now , bye to all take care and thanks ...............ami xxxxx

[pat57]

Da*n

when is the event?

get better quick!

Hope its a grand time for you!!!!!

[willows]

The official gold and green invites arrived at the begining of the week ..so posh

I'm still in a full plaster cast , the pain is not to bad , I keep testing the thumb + wrist by trying to pick things up then wish I hadn't done so .

I've now ( after about 4-5 different outfits coming and going ) found what to wear , nothing grand as I cannot get it over the cast ..............royal blue ( very bright ) chiffon 3/4 sleeved smock top ( no I;m not preggy ) one of the ones everyone is wearing now a days . Black elasticated long trousers ( cos , this girl cannot pull up tight fitting ones ) and black sandals plus of course an owl or phoenix on my shoulder

Well come on guys , I'm know for my lunacy so why stop .

We are not allowed to take photo's of the event ( mean things ) but I hope to get some official ones , soon as I get them I'll stick them on my site .

Bye for now as I need to rest , no sleep last night at all again , dam pain !

AMI

[flop]

Ooh sounds really exciting as the big day gets closer! I wonder what the HRH will make of the bird on your shoulder? I'm curious as to how much these birds weigh (the pictures look like they are a substantial size) and how you will attach it to your shoulder?

I thought you said you'd learnt you lesson about listening to the doctors? Did they not tell you that the plaster cast is to force you to rest your thumb completely? Be a good Ami and stop trying to pick things up - sounds like the pain is a warning to stop doing it (I suspect it'll take longer to heal if you don't rest it properly!).

Sorry - don't want to preach but I hate the thought of you in so much pain!

Take care,

Flop

PS - we'll need a photo of you at home all dressed up and ready to go, they can't stop you taking that one!

[corina]

enjoy the day ami!!!

hope everythin will go well! i'm looking forward to your photos,

corina