FMS and Dilated Cardiomyopathy

[Bev95]

I have had FMS for many years now and had come to terms with the changes this had made to my life...recently after having a cardiac arrest I was diagnosed having cardiomyopathy DCM (Dilated). I had an ICD fitted whilst I was in hospital because of the high risk of me having sudden death attacks. I have had numerous problems since my discharge from th John radcliffe hospital at Oxford in May...what with the hospital losing my patient notes etc..and having to wait for a 6 week check up which now is taking place in Oct... at Swindon in Wiltshire ..I hasten to add I live in Cirencester...Gloucestershire.....anyway to my calculation I will have waited five months from having the ICD fitted...It is bad enough having to come to terms with whats happend...and I have had to make some further lifestyle changes...! At present I am unable to drive for 6 months but the DVLA have not processed my information as of yet..and it could mean I will have to go for regular medical assessments. Everything impinges at the moment what the cardiologist tells them...but here comes the sticky wicket...I havent seen one yet...and my medical notes are lord knows where!!! My stress levels are at an all time high as well as the frustration of it all..I was told that I am supposedly to try and lead a stress free life...Hmm...enough said!!! My FMS has flared up something terrible...and my sleeping pattern is all over the place!! All of this may not be of any consequence to a lot of people...but for me this only impounds my health problems even more...not only that I am virtually isolated at home..luckily my daughter does come over...when she can...she has to take me shopping ...which was a chore at the best of times..before my cardiac arrest..Now its even worse....but I rather go to the supermarket than shop online for that is the only way of me getting out of the house! I get very depressed a lot and just feel is this all there is ...is this how my life is going to be...??? I have not been offered any help whatsoever..no cardiac rehabilitation, as get this I dont fit the criteria..I was sent home with a booklet and my added medications... I must admit I get angry when I see programs that were broadcast on BBC2 about disabled claiming benefits should be working...! I do receive DLA and I am on Incapacity Benefit I have been for some time now...I am a 58 yr old woman who once over could tackle and cope with most things...but since I was diagnosed with FMS things changed for me...now, I have this other medical problem...which, I hasten to add the amitriptyline I was prescribed did not help my heart condition... in fact it made it worse, as this medication can cause arrythmias apparently! I now have to come to terms with whats happened...but, when I think about my future it looks bleak!!! I am also worried if I have to go back in for reassessment...that will only add to my stress levels ...which is not good for my heart condition or my FMS...

[tulips123]

That's just appalling! It's like you're just left in limbo without even a timetable to tell you when the cavalry will arrive! I cant even think of anything that might help, except I wonder if your gp surgery could offer any help? The right gp can make a heck of a difference, and when you have chronic illness it's even more important. They should at least be able to point you in the right direction. If they dont seem very supportive, I think I would find out if a different surgery locally would be better. I feel for you, and wish all the best. Take care x

[Bev95 in reply to tulips123]

My GP does what she can but it was her that told me I dont fit the criteria for cardiac rehabilitation because my heart condition is more to do with the electrics and not blocked arteries...She does what she can for me regarding my FMS but its usually more with pain control...I learnt a long time ago not long after I was diagnosed with FMS that it will be a case of self help...and has been that since then...As I stated the amitriptyline didnt help with my heart condition...however no fault of the medics as I like them was unaware of my heart condition...it was only until after my cardiac arrest that this was discovered when I went through a series of tests. However, I would alert anyone who is taking that medication to be aware of the side effects this medication has and it can cause arrythmias..I am happy with my GP she is not too happy with what has happened..regarding my patient notes and how things have turned out. Overall I am ok with her but finding a decent GP is not easy..I know my previous GP to the one I have now was totally not supportive reagrding my FMS and thats what spurred me to move to the one I now have. But thank you anyway...I am going to let my cardiologist know in no uncertain terms that I am not amused with how I have been treated..with my recent medical health matters. Its good to know that at least I can talk to other people like myself who understand how difficult life can be for us Fibro sufferers...I think I am going to make an official complaint to the right bodies...that is certain. Thank you

Bev

[tulips123 in reply to Bev95]

I know there are times when I just need to let off steam, and clearly you've been through it! Sometimes, just have to stamp your feet and shout to be heard, if you have the energy. Wish you all the best. x

[RUBY51]

Hiya Bev, oh that is flipping awful. I am not suprised you are feeling down. Yes go to see your GP but also you can refer yourself to Social Services its quicker than your GP doing it. You should then get a Social Worker and they should refer you to Occupation Therapy for rehabilitation I think. It might be worth you ringing the hospital up and asking them about this too. Most hospitals have computerised notes called Care Notes. These were brought into the NHS about three or four years ago but were phased in to different departments and different parts of the country. I work for the nhs in cheshire in the adult learning disabilities team. But the paedeatric department for learning disability children in the same building isn't on computerised Care Notes yet but we have been for about 3 years! You might also ask the Hospital about putting a complaint in via PALS Patient Advice Liason Service. they will give you the telephone number for them and you should be able to do this over the phone and they will take up your complaint. Sit down and make a list and just do a little bit at a time. I would start with Social Services and ask what you are entitled to in the way of help, then your G.P. and Hospital. I know its easy for me to say but if you can look up on internet and or download or buy a relaxation cd it really has helped me to calm down. I have only got fibromyalgia with its problems but nothing compared to what you have. If you can type or write the sequence of whats gone wrong and when etc that might help you too.

I am not sure if you would be able to use Arnica gel for pain but I am sure if you googled it someone would know. Am not too knowledgeable on your other health problems but don't think it would be a problem unless you have any broken skin. Please check though as would hate you to be poorly due to something I have suggested. I buy the Arnica gel and bath soak from QVC and it is made by SBC.

I hope that something in this rambling blog helps and hope that you are feeling a little better soon.

Hugs

Ruby x

[Bev95]

Hello Ruby

I am ok with my GP and as far as social services are concerned I havent had much luck there...I am at present on a waiting list for a stair lift...! I think I am just going through a frustrating time and it doesnt help matters that most things at the moment are compounded by the fact I have lots of things to come to terms with...is it any wonder I get depressed..My GP has given me medication to help with that...It wasnt good when they literally withdrew my amitriptyline completely after my cardiac arrest I was given an explanation by one of the doctors at the John Radcliffe Hospital in Oxford...the sudden withdrawal had brought 'cold turkey' symptoms so to speak...just shows how medication can be addictive...as amitriptyline is an anti-depressant and I was on that medication for many years...! Normally they would withdraw you off meds like this gradually I was taken off it abruptly...I am now on Sertraline just hoping that does not have any unwanted side effects!! The sertraline is in place of the amitriptyline to treat my FMS... I hadnt thought about Arnica for the pain..I do take tramadol when its really bad...which lately is often..and I also take Diazepam when needed to help me sleep..! I often get restless leg and its usually at night time when in bed a damn nusiance when it starts as it interrupts my already haphazard sleeping pattern! I find myself having to use a wheat bag when that happens...I have used that when I am in pain too...! Yes it is comforting to know that I can ramble on this blog and know that there are fellow sufferers who understand what it feels like to be an FMS sufferer and the hoops and things we have to go through...! My family are a little understanding but now always...so its good to have blogs like this to talk things through and find advice too... Thanks anyway Ruby for your kind words and advice...I may well take it up with PALS and see what they can do ....I feel so so today...

Hugs

Bev

[sunsetsammy42]

Hi am so sorry to hear of your health problems. I would like to tell you a little about my own heath as it is similar to yours. I am a 42 year old woman who has had fibromyalgia for around 9 years. Two years ago I was taken into hospital with swelling and breathing problems and came out with the following conditions: Dilated Cardiomyopthy, Heart Failure and Insulin dependant diabetes. I was given an ICD two months ago and have had no problems with it. You said about rehabilitation but I think you weren't offered this because it is probably more for people who have had heart attacks(or your consultant felt you would not benefit). I feel you would benefit from knowing a bit more about your condition and feel perhaps you should speak to your consultant and tell him the problems you have been having and with check ups etc. Now I feel you are feeling a little isolated because of your diagnosis so it may help to join a Fibro or/and DCM support group. British Heart Foundation was my first step to finding help. I am not sure about you having to wait 6 months to drive as I thought it was just one month(my consultant who did the operation told me this)but maybe everyone is different. As for your benefits, I think anyone disabled on benefits finds it hard and is scared they may lose them due to this scaremongering. What other option do we have? Please try a new hobby or get your daughter if she can to look into local clubs that you can join. This is not all your life can be ,yet I understand the diagnosis takes a long time to cope with plus the threat of dying at any stage doesn't help. I took up an Open University Degree , so even though I may not be here to finish it, I will have been doing something for myself. Good luck with everything and I hope to hear how you get on, or if you need to talk I am happy to listen. Take care.x