Not the consultation I was hoping for

Hi, hope you are all keeping well. I've not blogged much recently but do my best to keep abreast of things. I get very sore finger tips so have to limit the amount of typing I do, hence my little replies to blogs and questions. Today I went to the GP to ask about my dry eyes and other bits and he said it does sound like Sjogrens but to tell my rheumy at the next appointment as it's him that will diagnose and treat it. I've been given gel eye drops to use in the meantime. I also mentioned that I've been going dizzy over the past week or two especially on standing up so he listened to my chest and asked if I'd always had a soft murmur? News to me :-( Anyway he said it's more than likely been caused by my RA and I need to have an ECG next week. He didn't seem too worried and said I'm ok to keep working out but I'm feeling a little deflated today. It's like being on a long scary road and feeling afraid of what lies around the next corner. On a positive note my blood tests have all come back good and my esr is now down to 16 which is excellent. I almost forgot to mention, I'm seeing the gynaecologist on the 26th and could possibly be having a hysterectomy. Hmmm, think I'm ready for the knackers yard...Do you think Findus would have a use for me?

38 Replies

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  • ooh dear I DID think and suggest sjorgens too yoy/ hysterectomy sounds v drastic? pm ( message me in private)

  • Thanks Alison, I've sent you a message x

  • Oh heck Paula - you always look do fit and gorgeous in your photo that its hard to think of you as anything other than this. I hate but when the fling in new problems and a heart mourner is rather a big one to land incidentally. I know I felt really out of sorts for a week of so after the physio said I had L5 degeneration in my spine - almost as if she was telling me it was a bit windy outside? Has your GP not referred you to a cardiologist if he's heard a heart murmer? When do you next see the rheumy? Your GP is meant to be the person who ties all the threads together. Hope things improve for you very soon and hope the rheumy is a bit more effective and gets stuff done for you. And you would make lousy Findus and anyway we all need you too much to see you turned into Paula lasagne!! Xxxx

  • Sorry about all the mistakes I'm being subjected to film called Pacific and eyes are really gummy with cold plus iPhone predictive text! Hope you get the gist. X

  • Heart "mourner" sounds about right for how I'm feeling today Tilda lol. I do try my best to keep fit and positive as it's my way of coping but even I'm struggling today. I would of had a cry but couldn't even do that as my tears don't work lol. I suppose the GP will decide what comes next after he sees my ECG next week. It's being done on Tuesday. I last saw the rheumy nurse 18th Dec and she said "see you in 12 weeks". I pointed out at the time that I hadn't seen the consultant since diagnosis in May so she said I could see him at my next appointment but as usual no appointment has come through yet. I've phoned the clinic today and said I need to see the consultant on GP advice due to complications. They're going to ring me back on Monday. Thanks for your concern Tilda, I agree I'd make a rotten lasagne. x

  • Sounds as if it's one thing after another for you, so hope rather than being chopped up for dinner someone is making something nice for you instead. Heart mourners can be nothing to fret about, as lots of people do get mini-mourners, so try not to worry too much in advance. The thought of having a hysterectomy is scary enough, so hope you at least get a good gynae to see you though. Fingers crossed. Pollyx

  • Thanks Polly x

  • lots of people live with asmall or soft murmur inc my one cat!! they wanted to do an ecg on the cat!!.

  • Lol, are you sure it didn't need a cat scan...*groan* sorry. I'm sure if your cat can cope I can :-)

  • they chexk its heart once a year with a stethoscope. no medication needed as yet!. as only slight

  • Hello Paula,

    Well you are having a difficult time right now. I must agree with Polly about heart mourners/murmers. My mum had rheumatic fever when she was a child and it left her with a heart murmer for the rest of her life, she lived a normal life and died at the decent age of 82. However, it's not nice to find out the way you did! It must have felt like you had been punched between the eyes.

    Sorry to hear that you might have to have a hysterectomy too. Years ago they used to whip a uterus out before you could say Jack Robinson, but these days there are all sorts of alternative treatments, as I'm sure you will know, and a hysterectomy is usually the last resort. So, my guess is that you have some history and it might be neccessary. I had to have everything removed including ovaries when I was 36. It was a blessed relief and I felt so much better straight after the op. So if you do have to have one done too, I hope you have the same sense of relief as me. Oh and I'm sure you are a long way from the knackers yard.

    I hope the next week or two will be as staight forward as it can be, for you.

    Take care of yourself, June x

  • Thanks very much June. Hopefully I'll still be here bothering you all at the age of 82 like your dear Mum. It was a shock but as the Dr said I could carry on with my spinning classes I assume he believes it's only minor so I should stop being silly and get a grip. It's good to hear you had a good outcome from your hysterectomy. I had a friend go through one recently too and she was relieved and wished it had been done years ago. I'll hopefully have options available as the last thing anyone wants is unnecessary surgery. x

  • Both my parents died of heart failure at the age of 73 but neither had heart mourners or murmurs come to that! Everyone of my immediate ancestors has died younger than 73 so I think if I make it to 74 I will feel like I've won the lottery. I do definitely think its quality over quantity though and if you love your exercise as you do and your doctor has said its okay then I'm sure it is. I felt like an old cripple when the physio told me I had degenerative disc in my spine but of course I've stopped panicking now. Not quite the same I know but as others have said lots of people live all their lives with heart murmurs/ mourners (it just corrects to mourners I promise its not me!).

  • Thanks Tilda, I'm sure your healthy lifestyle will make a difference for you too. 73 is really not very old these days. In fact the way this government is going we'll soon be expected to be working past that. Does your back give you much trouble? x

  • Well it only started just before Christmas and I thought it was just because I'd been carrying bags of shopping and doing some new yoga exercises. Then, on my 50th birthday back at the start of January I told my GP while he was doing my bloods and he examined me standing up and said that it was my sacroilliacs and could be inflammatory or could just be that I'd been overdoing things. Since we were both newly 50 we didn't mention aging!

    But then when the physio a month or so later, who I'd made an apt to see about my back and exercises via email, she examined my spine by lying me down on my front and pressing from the top down and when she landed on this bit I was surprised to find it painful. So she said she could see a dip where my L5 was and that meant it was degeneration of the spine "a wee bit early at 50 but there you go".

    Rather like yourself I felt a bit devastated to have landed this as well as RA and it has been sore on and off ever since. Today it's aching and it's really sitting down that hurts the most but it's nothing terrible - more that it makes me feel old and I pride myself on getting younger!

    But if every things gang up on me physically I usually focus on Stephen Hawkins and other disabled artists and writers and thinkers and people I admire who have had the odds stacked against them - and then I decide that the bit that matters is my mind and my vision and so far, these are reasonably intact so I'll not worry too much about the rest! Tilda xx

  • You have the right idea Tilda. It would be all too easy to think too hard on things and fall into a state of self pity. I hope your back improves soon x

  • Hi Paula,

    Sorry to hear you are having a bad time at the mo, least they have got you an ECG quickly, hoping that the results will be ok. I get awful heart palpitations and was sent to have this checked out about a year ago, apparently my heart does some kind of funny beat where it doesn't fill properly and then tries to overfill on the next beat. It's a horrible feeling, like my heart is going to jump out of my chest, consultant said he could put me on beta blockers but they can cause more problems than just putting up with the palpitations.

    Please let us know how it goes on Tuesday, will be thinking about you.

    All the best

    Mary x

  • Palpitations are horrible but I agree sometimes it's better to just live with things rather than take even more pills. I suppose I'll have to wait for the GP to read the ECG before I get any feedback but I'll be sure to post an update. Thanks x

  • My dad had something like this Mary - it's called Arhythmia I believe? TTx

  • Oops just checked and it's spelt arrhythmia. But he was diabetic and had very high bp too and that had more impact on his heart.

  • Well paula i have just lost all that i was writing,so i'll start again. Your dry eyes can be helped by having your eyes cauterised and i would highly reccomend this as i have had it done. It is a 5min job where they numb your eyes and then cauterise them. The hardest part was when they numb your eyes. It is a 5min procedre and you don't have to cover your eyes all you need to do is wear sunglasses for a while. I have had it done and though my eyes still get dry they are not as bad as they were before.Sadly you will have to put drops in your eyes for ever because of good old ra,but that is better as long as you can see. I don't regret having it done.

    Hysterectomys are a lot easier today than they were 17yrs ago when i had mine done. It was my 40th birthday gift!! three weeks before i turned 40.

    Take care love sylvia.xxx

  • Good grief Sylvi you've certainly been through the mill! That eye op sounds a bit scary so I think I'll make do with the gel while it works. x

  • It is a simple op Paula it really is. It was easier than the knee op last may,that one i am still recovering from. xxx

  • pauly

    you made me laugh when i am on a downer this morning

    do you think findus would have me!!!!!!!!

    personaly though ive been eating their products for DONKEY years AND ITS DONE ME NO HARM

    i relay dont know what all the fuss is about with it

    how many times have you herd the saying "i could eat a horse"

    and now everyone is complaining about it.

    im a male so i think i need turning inside out with my problems and banging agains a wall see what falls out

    hope you feel better soon pauly

  • Thanks, I'm more worried about the chemicals and additives in food than the type of animal to be honest. I must admit I've always felt a little guilty about eating meat whatever the beast....not enough to make me give it up though! I would just prefer it to be labelled with the correct animal so I can put a face to my food.

  • i think we are all woried about what we eat after seeing that

    hope it cheered you up a bit the pun

  • Your answer john has just reminded me of something that happened to my mum. She was at the drs over her back and she said "if i was a horse your would put me down" his reply was "no we would put you out to stud" it would be a bit iffy if they did that today,you would never know whether you were going to be lasagne or spag bol......xx

  • good un sylvi up early this morning made wife her flask she has gone walking up in the lakes this morning.

    trying to veg a bit and chill out which tilada has told me to do

    still got them little nodules that are red on me fingers and cutting down the fags a bit

    even when i shake me best leg now the bleeding knee rattles

    if i can pull this back again i can plat sawdust lol

    so as ya can see if still hyped up about it probably after i will think whats all the fuss i made about it xx

  • John stop worrying mate i have had a wash out of the knee,they will check it out and see how bad your knee is at the same time. I am not going to say you'll be as good as new because that would be a lie with us wouldn't it. It will show if you need a replacement.

    I have only just got up,don't know whats wrong with me these days as i don't usually sleep like this. I know my joints are not being kind to me john and i don't know why. I am rather fed up with the pain. I saw the foot lady on friday ( i would say podiarist but wasn't sure if you knew what i meant as a lot of people don't) She checked my reactions out and told me to get some pads to cover my hammer toes and to see the dr ref; my burning feet as she is not sure what that is.

    So before i go please stop worrying about that op. OK. xxx

  • i will try silvi

    not enough sleep and sweating got to be subconsious stress hasnt it

    it might only need a wash out and this will at least tell me whats been happening over the years these mri's must be crap as most of us on here they dont know whats going wrong

    but when you walk over and the other starts hurting in the feet area you think what is this now not 2 please.

    and i will show my behind in b and q if its not got something to do with pattela underside worn away not giving stability

    quad is still strong though with me exersises ive been getting it ready .and that phisio guy who did that tens machine has real helped get it going

    regards pain im finding since i stoped me clucosomine and me omega 3 and magnesium stuff its gone worse in 2 day they told me at pre op to stop taking week before and that stuff must have been helping

    all that sleep your getting slvi it must be helping to relax you a bit to help repair your body a bit

    cos lets face it you dont half push yourself in not giving in to it

    when i remember how me gran was with it back in the 1960 she must have been in some pain and they didnt have the drugs they have now for it.

    go for blood tests again monday so starve after 9pm

    whats happened to the tv these days all thes programs we have and their is nothing worth watching

    bought taken 2 at asda last sat you got to watch that silvi it fantastic have you on the edge of your seat which he would do another but he said loosing someone 3 times is preety IRESPONSIBLE LOL

    bet hubbys down oin the alotment today weather brightening up here in leigh

  • John,he is getting the lunch ready as grace was supposed to go to standard practise this morning,but the man that was supposed to pick her up has forgotten so she is hoovering up for me instead. I think i will try and go out in the garden later when the drugs have worked.

    It has not been a good week for me either john,i have had a few problems walking which is strange as i was doing so well.

    before i go i will say again john don't worry it will be ok.xxx

  • Hi wow what a lot of info to be dropped on you! The heart murmur is often something you have had and doesn't cause problems, I have had one since childhood an it's only when the GP told my mum that I found out, no problems even having babies etc. I have since had ecgs and found a irregular heartbeat thought to be from my RA, which I got a tablet for and is all settled. I found the thought of going to the cardiac department much more worrying than the reality!!

    I had a hysterectomy after years of heavy bleeding and abdominal pain, I would find out though if your condition is treatable by laser or other means, but I must admit it was the best thing I had done for quality of life, they kept my ovaries but I had it done vaginally so no scars and a quicker recovery.

    My husband has dry eyes and I would ask if the drops are not effective to see an eye doctor. Sylvie is right in severe cases of dry eyes they can cauterise the little drainage holes but that is irreversible and often when done as the condition changes you can sometimes get spilling then of teardrops, although for others it is helpful. So they can in extreme cases put tiny rubber bungs in your punctum which stop the tears draining away but as in the case of my husband be removed if causing too much tear build up. But for me just put in the drops regularly, keep your room moist by using humidifiers and plants and actually make yourself aware to link particularly when on the computer like now,( yep go on blink!)

    As for the horses yard I see you much more of a dressage horse than a scabby meat horse anyway lol. I'm sure all these things will sort themselves out, but such a shame thy all come together, hugs and hope all settles down Axx

  • My friend recently had the vaginal hysterectomy too and she says it's the best thing she ever did. I'm not sure what options will be available yet but I'll try to get the least invasive procedure available. x

    I would just like to thank you all for the wonderful support and kind words as it really helped me through a difficult few days. You are the most amazing and supportive friends and I'm lucky to have you. x x x x

  • hi allanah how you feeling now after your operation i hope you are much better xx

  • It takes one to know them Paula! And I also wanted to add that as you haven't seen your rheumy since May I think you should push very hard to see him as it's not right to be left high and dry when you have so much going on medically just now. That's 9 months which is an extraordinary wait for a follow up consultation when you consider the drugs we are expected to take and the potential seriousness of this disease. It's not as if you are sero negative or have a negative anti-ccp either so I'm quite shocked by this and want you to really kick ass to get seen very soon please! You need a plan in place if you're going to have a major op and you have this heart murmer and the eyes re your RA meds. Tilda xxx

  • I totally agree with you on this. I was basically handed over straight after diagnosis to the specialist nurse and am not happy about this myself. Although she has been lovely she is not a rheumatology consultant at the end of the day. If I don't get a follow up appointment with the consultant I will most certainly be writing a very strong letter of complaint. Everything is always a fight!! x x

  • Oh isn't it just Paula? But as you know I fought tooth and nail to be seen again by my consultant and that was only 8 months wait. It defies belief that they can expect us to take these drugs and try and grapple with the reality of RA without proper medical supervision from those who diagnose us. Please be really fierce Paula - this seriously sucks! X

  • Wow! Never rains but it pours! What a lot for you to take in and deal with! From people I know with a heart murmer, it can be managed/rectified quite easily. I know RA can cause this kind of thing and I thought it had happened to me, but ECG proved okay. So, if you have a hysterical ectomy - there are pluses and minuses. Had mine at age 43, HRT didnt suit me at all so managed the menopause effects with natural supplements. The worst part of it was not being able to do anything for about 6 weeks! As I was living alone at the time, it was pretty frustrating.

    As you obviously keep yourself fit, I think you will get through all this with flying colours - stay positive, take things slowly and one thing at a time.

    I do hope all goes well for you and that your consultant and GP do right by you (that in itself is a bit of pot luck isnt it?)

    I did a blog for first time ever today about walking boots, so have to thank you as well for your advice. Ended up at Go Outdoors in Saltney.

    Stay well, keep smiling.

    xxxx

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