BACK AGAIN STILL NOT RIGHT

[Cimmy]

well here I am again, it’s been 4 weeks since my diagnosis of blood clots on lung, I have been doing ok but just don’t feel well, can’t put my finger on it but it’s horrible. I just feel so unwell. Could it be the medication, I’m on Edoxoban 60mg daily as well as my regular medication. I feel like I’m hungover with a really bad upset stomach, I must say the breathlessness is not as bad but I still have my moments. I just want to feel well, I’m feeling so sorry for myself I could cry 😢 thanks for reading

[teddyd]

What is your GP or consultant say about how you are feeling?

[Cimmy in reply to teddyd]

hi, I haven’t seen my gp or consultant, I have a telephone appointment on Wednesday with the anticoagulant team so I will mention it then, I suffer really bad anxiety so don’t know whether that has got a lot to do with it, I feel ok for a couple of days then whammmm I feel like rubbish, I just can’t put my finger on it, I will definitely mention it, I’m wondering whether it’s the medication, I’m on quite a high dose so I will find out what’s what can’t go on like this. Take care

[teddyd in reply to Cimmy]

Maybe if you are not feeling any better you should call your gp tomorrow xx

[jackdup in reply to Cimmy]

I would imagine it could be a combination of your anxiety and the medication, although if you feel fine for a couple of days and then feel terrible, or not well, wouldn’t think it would be the medication as one would think the side effects of the medication should remain reasonably consistent. Sometimes the longer a person is on a medication your body adjust to it and the side effects can go away but wouldn’t seem they would be okay for a couple of days and then return. I hope and pray you can get this sorted out as it is not a pleasant way to live. Good luck.

[Alberta56 in reply to Cimmy]

Hi Cimmy, I know we are all different, so our reactions to medication and to the illness itself can differ, but your experience rang a bell with me. I am not on any very strong medications, I do not suffer from anxiety, but I do get the good days/bad days which you are experiencing. I don't know if it's the body's way of telling me I overdid it yesterday and demanding to take it easy. I think my body is a wimp. I hope your medical team can come up with something to help you. All the best, Chris xx

[Cimmy in reply to Alberta56]

hi and Thankyou for your kind reply, I think you might be onto something when you said the bad days follow a stressful and busy good day in my experience, I get so very stressed and seem to suffer really badly for a few days after. My body is also a whimp, never does as it meant to lol. I’ve spoken to my anticoagulant nurse today and she’s changing my medication to see if that helps but other than that it battle on I suppose. Take care Chris x and thanks again it’s so nice having support and kindness.

[cofdrop-UK]

so sorry you feel so horrid. Hope you feel better soon.

Xxx

[Cimmy in reply to cofdrop-UK]

thank you it’s means a lot

[Katinka46]

So sorry that you are feeling so rotten. I can’t really help but please make sure you tell your doctors what you are experiencing.

Love

Kate xxx

[Cimmy in reply to Katinka46]

thank you Kate x

[Karenanne61]

I hope the doctors can help you feel better very soon.

[Cimmy in reply to Karenanne61]

thank you

[Ergendl]

All the best for the consultation tomorrow. Maybe write down all your symptoms and your questions, so that you have them to hand as prompts during the phone call. There's so much the caller will miss because they can't see you.

[Cimmy in reply to Ergendl]

hi and thank you for your kind reply, I have written down how I’ve been feeling as my mind goes blank, I would rather see someone but that is impossible these days. I tried to get a gp appointment but to no avail. I feel like I’m invisible sometimes. It’s so good to have this forum, everyone is so kind and supportive, don’t know what I would do without this site to be honest. Take care

[Bingo88]

So sorry your not feeling well. And that adds to our Anxiety and sadly it seems we are basically left to cope on our own a lot of the time and nobody cares except for people on here who sympathies because we have the similar conditions and worries. Hope you get some help and feel better soon. Brian

[Cimmy in reply to Bingo88]

hi Brian and thank you for your kind reply, you are so right when you say you feel like your left in your own to deal with things. If it wasn’t for this sight I would of gone mad by now, people are so supportive and kind which is a great comfort. Tried getting an app with my go this morning but no appointments left, so I will wait until tomorrow. I’m going to spend the day in bed and try to relax and hopefully it will pass . Take care Brian x

[Tykelady]

So many medications can cause upset stomachs. I would check this.

[Cimmy in reply to Tykelady]

hi and yes I agree, I have been on my medication for many years, but since being on the blood thinners things haven’t been too good stomach wise, I have telephone appointment with my anticoagulant nurse tomorrow so will definitely mention it

[Izb1]

Can't offer any advise Cimmy but hope your consultant can suggest something to make you feel better x

[Cimmy in reply to Izb1]

thank you for your kind reply, hopefully I will get some answers tomorrow x

[Izb1 in reply to Cimmy]

Pleas keep let us know how you get on x

[Cimmy in reply to Izb1]

I will, I shall post after my appointment tomorrow, and hopefully get some answers and maybe some peace of mind x thank you for being so kind it absolutely helps to know I’m not alone in this x

[mike012j]

So sorry to hear your problem I do hope you improve. I have recently had an copd exasperation and they discovered heart failure at the hospital. keep at it and keep willing yourself better,. you will win. God bless

[Cimmy in reply to mike012j]

thank you for you kind reply, I’m feeling a little better today. Just adjusting to the new normal I suppose, I wish for you a healthy happy days. Take care

[Bakery40]

Hi Cimmy ,hope you are feeling better by now. I'm very sorry you had to go through this. I feel you as I had blood clots on my lungs 🫁 twice and I never been the same since the first one. The breathlessness I can have is something else. I never use to have problems with my lungs before. Now even hayfever or steam is a problem. Since then I'm on warfarin - lifelong and on inhalers. I wish you all the best and stay positive 🤗 xx.

[Cimmy in reply to Bakery40]

thank you for you kind reply. I’ve just had app with my anticoagulant nurse, I too will be on thinners for life. I’m the same as you with the breathlessness everything has change for me and it is quite a shock. I’m on Rivroxaban. Just got to find the new normal i suppose. Stay well and thank you x

[Bakery40 in reply to Cimmy]

Thank you 😊. We stay or start the new normal as much we can. Good luck. X