My story

Hia.

This is the first time iv posted . I have read many many inspiring stories though and the advice is always fab.

My story begins last July when I was diagnosed with prinzmetals angina after I had a minor MI and spending 5 days in coronary care.

Use GTN spray when needed during the night and I never leave the house without having my spray in there just in case as it normally works a treat. I was put on calcium channel blockers. Statins and aspirin. I stopped taking the Chanel blocker as it made me feel so bad and did not seem to make much difference .

Then come November I starting getting cold hands and fingers and they would go white and then blue etc. Classic raynaurds. Over the next couple of months I had regular attacks daily and my nails started to get these black marks under them and little red spots on my finger pads. Put up with it as best I could and tried to keep my hands warm,

In Feb this year my left thumb swelled up and hurt like buggery. So went to Gp as I can't take anti inflammatory tablets as had a Nisson fundoplication operation on my tummy in 2006. Due to Gerd and reflux as I was allergic to PPI's. And the Gp decided to refer me to rheumatology as he thought I had vasculitis in the nail beds and wanted the raunaurds checked as well.

Saw this lovley consultant in March By this time. My thumb was fine. But my raynauds was really bad and quite painful. She ordered loads of blood tests and scans and stuff and said see u in 10 weeks.

My raynauds seemed to get worse and worse and by Easter I had a open sore on my index finger with a nasty scab on top.

I went to the Gp at the end of April as pain soo bad and sore was now an ulcer and was turning black. he sent me to A & E after speaking to them. I was admitted to hospital for 5 day infusion treatment of ilaprost. I tolerated the treatment really well as Long as I had anti sickness and pain relief. But on day 4 the pain kicked in to an extent that I was on two hourly injections of morphine, 10 tramadol a day and paracetamol. I have never experienced pain like it in my whole life. Far worse than child birth or broken bones. The pain never seemed to go away and I would sob. The pain would come on at any time in a massive wave and be like a red hot poker being shoved down the centre of my finger and I would want to chop my hand off to get relief. I was in hospital for 7 days instead of 5.

I have been on morphine and tramadol ever since, only thing that seems to control the pain enough. Some days are better than others though but not sure why.

Saw the consultant at beginning of month hoping to get a diagnosis and treatment plan. My ulcer had not really got any better. Still hurt so much especially if knocked or banged. I would cry out in pain when I knocked it by mistake.

The consultant was not happy with my finger and the results came back very mixed and she wanted me to have even more tests. Put me on steroids, Losartin and aspirin and said that she needed to think about the next step. One option is If these meds do nothing in next two weeks she would refer me to the Royal Free hospital

to have Bosartin treatment as West Mid was not licensed to use.

Have coped really well with the steroids apart from the sweats. Drenched some nights. Three times over. And my ulcer has finally started to heal. Yay.

Went back to consultant last week and even more tests to be done as bloods come back positive in some antibodies and still can't feel my radial pulse on my affected hand. Have a right carotid bruit whatever that is. Bit she was much happier with my finger.

My vasculitis has settled well on the steroids and I keep taking all my meds. Just starting to reduce the steroids every ten days.

Seeing consultant again in a months time . I asked her if she thinks it is a connective tissue disorder or have I just been unlucky with raynauds and vasculitis. Unfortunately I didn't get answer I wanted as she said it is most probably auto immune, connective tissue disorder but can take a long time to get proper diagnosis. At least she was honest with me.

I have been unable to work since I was admitted to hospital but hope to be able to go back next Monday. As long as the pain has gone and I can type.

I try to keep the faith that I will get a good diagnosis as with all the research and reading peoples stories I really don't want to have to live with it. I admire and take my hat of to each and every one on this site that is living with or supporting someone with it.

I didn't realise how much I have written. It's only when you start writing it down that u see how much we have gone through so far. With a lot further to travel .

We must always try to have positive forward thinking. And without my friends and family's support and love I would never of got through it, to this point.

Thank you for taking the time to read my story and I will keep u posted. Love and big hugs to everyone. Xx

7 Replies

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  • Gosh that's some journey you've been on so far Polomint46 - I was just about to post with a story of my own actually but yours knocked the stuffing out of mine!

    I'm just back from the European League Against Rheumatism's annual Congress in Paris where I was invited to speak about telemedicine. I attended a symposium about Raynaud's and they talked about digital ulcers and primary Raynauds as well as secondary.

    Have they conducted a nail fold capillary examination on yours yet? Apparently it is usually possible to distinguish between the two types of Raynauds by this method. Both types can cause digital ulcers I believe although secondary is much more likely to.

    The thing is that tomorrow I will have a heart monitor for 24 hours because I've been getting this strange heart crushing sensation at night. Because of my circulatory issues and RA I was looking into this Prinzmetal Angina a few weeks ago. My mum died unexpectedly of heart failure a few years ago and the coroner said some type of undiagnosed angina was the cause. She had similar symptoms to mine now for a few years as I'm having now and looking back I've wondered if she didn't also have some kind of Rheumatoid disease too of an autoimmune nature. My dad also died of heart failure from diabetes and arrhythmia so I suppose I do fret a bit but had an ECG and overnight hospital visit last year and all was fine. Then these palpatations started. So your story is very interesting to me. I hope you get a clearer diagnosis soon - it does sound like some sort of autoimmunity could be the cause. I too can't take PPIs and have just come off Nifedipine - the first line calcium channel inhibitor I was tried on to help my circulation because the side effects have proved too much for me.

    Warm regards, Twitchy

  • Hia

    No I haven't had that particular test yet. The next lot is scan of liver. Ct high res of chest and a angiogram of arm re my non excitant wrist pulses .

    It's such a waiting game as symptoms come and go and change so often. So very difficult to get quick diagnosis. And to be pain free is my biggest dream.

    Hope all goes well with your 24 hour monitor.

  • Well my problems seem relatively unserious compared to yours but my symptoms also change constantly so I feel like a menace to my doctors all the time. One thing gets addressed but the drug used to treat it then causes another. I'm highly allergic so starting a new drug is usually very daunting. I do really feel for you because it is all so bewildering. I do at least know that I have autoimmunitity very clearly and that I have a robust diagnosis of RA - the rest feels up for grabs though! Good luck to you with your scans and biopsies. If I were you I would ask to have a nail fold capillary test done as they are really non invasive and reveal a lot of information - that much I did gather. Twitchy

  • I feel for you. I have had that trouble with the finger including the hospitalisation with IIoprost and loads of antibitics. Boy, was it painful! But that was 4 years ago. I am very careful now. I have Iloprost every 2 months for three days. It seems to work.

  • I used to have these sores. At the end of my fingers 3 both sides was in agony we them. How do you think iloprost helps I had it once about6/7 years ago

  • . I think the iloprost did help. But not straight away. I do think the other meds she put me on two weeks after I had the iloprost which was steroids, Losartin and aspirin helped as until i started on these my ulcer did not start to heal. Since then ,

    The raynaurds on my left hand has got better at tolerating temp change and my vascalitus has settled in both my hands, the horrid black marks under nail have gone.

    Just left with my ulcer now. 10 weeks and counting , but is drying out and starting to heal which is just the best thing ever. But seems to come to a stand still now..

    However I have had the most excruciating, stinging and searing pain down my finger. Not the ulcer. My finger is swollen but does not look infected. I have been sobbing with this pain nothing helped, it would come in waves. Even tramadol and morphine struggle to get it under control. If my ulcer is healing why would I have this pain in my finger. Any ideas would be so greatly appreciated.

    I have decided to put myself back on antibiotics just incase it is infected. And it may even help the swelling. Can't believe the pain. It's the worst ever. Will try anything to see if it works.

    Iv gone on for ever there. Sorry huni's.

    Good night all

    Hope u all have a fab pain free eve. Xxxx

  • Hi Polomint46, I can only impart my personal experience. My Rheumatologist always makes it clear to me, regarding any issue concerning digital Ulcers. He said, 'You MUST visit A and E immediately, and ask them to contact me'.

    I have also had issues with an erratic pulse. This concerns me even more because an explanation has not been given. Aspirin is the one medication that I feel I'm benefitting from.

    As you say, you seem to have the classic symptoms regarding Reynaud's, and you are obviously aware of the other accompanying ailments.

    Take care and God bless, unfortunately all these tests take an age to complete. When you know the reasons and get a prognosis you can move on.

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