home from hospital after blood clot.

Oh my goodness

What a lot you have gone through ! In view of the fact you have gone through so much I am sure you will be closely monitorred Im afraid your pain doesent sound familiar at all I have always found PMR pain to be more of an ache than anything and really makes you stiff and impossible to move the joints as though the muscles had all suddenly got shorter and wouldent bend as far as you would like them too I think someone described it as having a bodysuit that was too tight

Of course all our pain doesent have to be related to PMR and we can have many more things at the same time

Im really sorry you wont be able to visit your daughter now but hope you feel better soon

Mrs G

Thanks Mrs G, your concern much appreciated.

Hoping tosave some money & send to my daughter so she can afford to bring the family for a visit, will manage it soon I hope.

Trying to be positive , as I said another day tomorrow.

Will keep in touch.

Amycakes.

Oh Amycakes what a rough time you have been having as if PMR wasn't quite enough to be coping with.

I haven't actually suffered pain in the area you describe although I did have a lot of upper arm muscle pain that was caused by knots in the muscle around the shoulder blade area and which a wonderful physio massaged away. It sounds as though your pain is related to the clot on the lung and, hopefully, as the Warfarin dose really kicks in the pain will reduce.

I'm not surprised you are \"hugely fatigued\" after what you've been through but with lots of rest I'm sure you will start to feel better soon.

Nefret who also posts here had a similar experience with, I believe, an embolism on her leg some time ago (hope I've got that right, Nefret?) - she was also on Warfarin, and I'm sure she will join in here and may be able to reassure you lots more through her own experience.

My very best wishes,

MrsO

Amycakes

Please take it easy, your body has had a battering, you do not get well in hospital, they deal with the problem, you come home, you rest and take care of yourself. Pretend you are still in hospital and do not do anything at all or as little as possible.

Your body needs time to sort itself out. Thin about a washing machine and how sometimes the clothes come out all in a tangle and you have to sort them out slowly. Well that is what has happened to you. Your body does not understand why it has been invaded, why it has to take warfarin and it needs time. Steroids are blood thinners and so is warfarin. And it also has to get used to thinner blood.

Fatigue, go to the website www.pmr-gca-northeast.co.uk or get somebody else to go it and download and read 'How to Cope with Fatigue' it might help. But what will help is you not trying to do something.

Give yourself a break please.

Here I am Mrs O!

Amycakes, not only did I have a DVT of the right leg some 20 months ago, but have also had to accept that I cannot do long-haul flights and so cannot visit my daughter in New Zealand! How's that for coincidence?

Mine was caught in time (thanks to my husband who threw me in the car and took me to A and E, he said he had noticed I wasn't my usual self! I have never asked quite what that meant.....)

I was on Warfarin only for about 6 months as other things overtook me, medically speaking, and in the end was stopped taking it more quickly than usual. I am still monitored on a monthly basis along with all the other stuff - every time I see a different doctor I have to tell them what needs to be put on the form!

You will do well, I'm sure - don't let it frighten you into living wrapped up in cotton wool, just take it day by day and do what you can when you can.

As Mrs O has said, fatigue can be the main problem with just about everything we have or are taking, and your body needs time to get used to it all. Try to go with the flow - if you don't feel up to doing stuff, then leave it and try again another time.

I have a big medical review coming up this week, so have got everything crossed - I really do not need yet another pill for anything!

Take care, I wish you well.

Nefret

Amycakes my heart goes out to you......... cannot offer advice, just my support and good wishes for a good recovery from the DVT.....take it easy

Amycakes, I second Fifties girl's good wishes. Do hope you win a big ERNIE or lottery or back the right horse so you can see your daughter very soon :blackcat:

Oh Amycakes, that's such rotten luck. My youngest daughter had a DVT two years ago aged 38, it was such a shock. She said the pain was unbelievable, so I sympathize with you on that score. But the restrictions it puts on your life are the most difficult ones to come to terms with aren't they. I do so hope you soon get to see you from New Zealand. Take care.

Lizzie xx

Hi Amycakes,

Echoing what everyone else has said really.

To say \"you are gutted to say the least\", must be the understatement of the year, I am so sorry for you.

At least you are thinking that tomorrow is another day, let's hope that the positive thinking will bring some luck your way and you will be able to bring your NZ family here for a visit.

Take things easy for a while and gradually increase what you FEEL like doing and not what you think ought to be done. I have learned that the dust will still be there another day ! and so will good friends.

Best wishes, Julia xx ( DD )

Amycakes. What a terrible experience you have had. So glad you are back with us now. It is sad for you not been able to go to NZ. But, you are here, and first off all, you must get better, and then you will resolve how and when you will be able to see your daughter and family. I wish with all my heart a speedy recovery for you. Take care. An d see how many here on this forum really care ? It makes us want to be a BIG HUG for all of us ! Love. Granny Moss:rose:

Amycakes

Just had a thought, I don't fly (too long to go into) but when I was going to go to Canada, guess what Cargo Ships. I wrote to the Observer travel people and they put me onto them. Now we have the Internet - go look.

The sea :bluefish: was there before the planes. :angel: (Could not find a plane so used Winged Angel)

Amycakes,

Just adding my best wishes for a speedy recovery. I have heard about travelling on cargo ships...apparently they only take a max of ten passengers and there is no entertainment like on a cruise ship....and the cost is nearly as much :roll: but certainly worth investigating as another option.

Best wishes, pauline

Now then, Amycakes: don't give up yet, you may not be able to go to NZ now, immediately, but there may be nothing to stop you later on if you still need/want to go. My husband has a genetic clotting disorder which was discovered after he had a hernia repair and then developed a sore leg a couple of months later - a DVT in the thigh, which is BAD, though not quite as bad as a PE as you had. Nevertheless - it was the lungs not the heart or the brain. (I still maintain that had he mobilised properly it might not have happened (he tried to tell me a hernia repair is more invasive than a C-section :roll: men!) and it wouldn't have if the UK did what every other country in Europe does and gave heparin post-op. He will be in Warfarin for life. But that's by the by.)

Since then he has flown to the USA umpteen times and also to Korea - always involving 14 to 16 hour total journeys. After all - if you are on Warfarin there isn't a clotting problem! Going to NZ is much easier with a stop or two on the way to break the journey and adjust to the time difference anyway. And with a specialist company, travel insurance after a time is no longer extortionate - you have to shop around. NZ has special arrangements with Gb anyway don't they?

But take it easy now and as MrsK has said: REST. Even a few days in a hospital bed with nothing wrong takes it out of a fit person (confirmed by research!) so take your time to recuperate. You deserve it.

All the best,

EileenH

Oh what lovely people you are, it brought tears to my eyes when I read all your messages.Thank you sooo much for your support.

I cannot remember all your names ,but I thank you all for taking the time to write.

I am trying to behave myself, my husband bless him is doing his best, I do help in such a small way , making cuppa,s, talking him through cooking etc, I sit in the kitchen chair & survey what was my domain.

I take in all you say about resting , I cant do much else at the mo'I go for a sleep in the afternoon after lunch , I sleep about an hour.My legs are like jelly so weak.

Saw doc today about this pain, she was stumped!Told me if I get it again see another doc in the practice for a second opinion!

Today no pain.thank God.

Dropped to 40mg steroids today, seeing my doc who is dealing with p.m.r.soon.also had appointment for a bone scan in June.

Everyone tells me I will feel better soon & I am better than I was, so must keep positive.

what a coincidence that someone , sorry forgot your name, has a daughter in New Zealand too!She lives just outside Christchurch, but luckily is safe after the earthquake.

I will get to see her ,its been 6 long years, but I do see them all on skype now.

Will keep in touch & again thank you for your support , which I badly need at the mo.

Amycakes.

Amycakes

I'm so glad to hear that you've had a day without that horrid pain and let's hope that's the start of many more good days to come as your legs get stronger as well. It's good to hear that you have a helpful hubby - I would not have coped without mine during my early horrendous PMR days. Good luck with that drop to 40mgs today - it's a step in the right direction!

MrsO