Your opinions, am I being paranoid?

[Mumof2girlies]

Hi again,

I recently asked a question as I came off warfarin on the 15th of April after 8 months of treatment following a DVT which embolised. I ended up in hospital a week after coming off the warfarin with awful chest pain, but the scan showed no new clots and the old ones had cleared and they sent me home with some tramadol for the pain. Now here is the bit I don't understand, the chest pain was very real and is now back with a vengeance. For the last 4 days the pain has been the same and worse in some ways as it was when the PEs were first diagnosed. The only difference is that there hasn't been the preceding "fat" leg like last time although my left arm keeps going painful and then numb. It hurts to take a deep breath and yesterday for about a minute I was unable to breath for the pain. I am not sure what to do, do I go back to the doctor? It almost feels like I am attention seeking although to be quite honest, I rather hate the attention and would rather convince myself that it is residual pain and take some tramadol, however I realise this is a serious matter and with two little ones, I can't afford to be so self indulgent. Has anyone experienced residual pain to this extent? Could it just be my lungs adjusting to post embolisms status?

Thanks again.

[darceynjo]

Hi Mumof2girlies, This is so weird I have had the same thing as you and are still going through it now, I had a massive PE back in Jan and have just come of Sinthrome (I couldnt take warfarin due to hair loss and itching) Approx 1 week after coming of my Sinthrome I ended up in A&E with chest pains I thought I was having a heart attack or my clot had returned but the hosp said no, even though I was kept in hosp overnight they couldnt find anything and I was told it was due to the trauma I had suffered due to the PE and they diagnosed Musclosketal Chest Pain and told me to take tamadol, I am now in severe pain in the centre of my back as I am writing this and dare not take deep breaths, I am still unsure that this is the result of the PE or maybe I am just being overly worried too, hope we can both get some answers on this Take Care Julia xx

[tk11]

Go back and speak to your gp just to be on the safe side.

A simple D dimer blood test will show if you have problems again.

Good luck x

[Amoobaa]

My Dad had some chest pain that seemed to be a result of damage to the areas of lung that were starved of oxygen during the time the PEs affected his lungs. In my experience it is better to ask and be proactive- go with your gut instinct. Obviously you are being cautious and careful because its your body and your life! You have every right to make sure this is investigated- and it can be so hard to fight your own corner, especially when you're worried that you'll be thought if as attention-seeking. But you have genuine symptoms that you have every right to discuss with a doctor. It is uncommon but possible that you can experience clots in your arms too. Do you know why you had the clots in the first place? Have they looked into screening you for thrombophilia? (They have to wait till you're off the anticoagulation before they do that) or have they already established a cause? This being said, there are many other reasons for arm symptoms.. but I think they ought to give you time to talk things over and take you seriously. Even if its just residual pain, they ought to spend the time to be certain and reassure you- especially when you've had episodes of shortness of breath. Given your history they ought to be more than happy to check you over and be especially thorough with their investigations.. Let us know how you're getting on.. There's a campaign going on at the moment called 'shhh'- by life blood, a uk charity.. because DVT can be silent, it can come without symptoms.. It doesn't always present with swelling and other signs x

[Mumof2girlies]

Thanks everyone for your replies. @tk11, I've just been back and the D dimer was negative, I would be jumping for joy except that in July of last year, the D dimer was negative on a Friday, things got worse, it was positive on the Monday and by that evening I had multiple PEs :-(, it failed to pick up on the DVT despite what I fondly call my "elephant leg" which delayed action and one could argue that early treatment would have stopped it from embolising.

@ Julia, I am really sorry you are going through the same thing. It is so frightening. The doctor was really kind and reassured me that he didn't mind seeing me as many times as it took to get me to a place where I was confident it was just musculoskeletal pain and aggravated scar tissue which was today's diagnosis. I have tried to avoid using tramadol but I guess it is time to give in. In the mean time, I guess we will just have to avoid, burping, yawning, taking deep breaths, laughing etc, it is amazing how much all those can hurt. My friends and family are under instruction not to make me laugh, it is the worst, lol (ouch!). Good luck, I hope it eases soon for you.

@ Amoobaa, I'm sorry too that your Dad is going through this, sometimes I think it is harder on family members because outwardly, there doesn't appear to be anything wrong with the person suffering and yet the pain can sometimes be crippling. My Girls bless them have learnt to give me a minute if they see me struggling with something. The doctor has been really kind and understanding and is quite happy to see me as many times as it takes. We are currently awaiting some genetic test taken post coagulation but the result can take quite a while at present they have ruled it as being due to environmental factors.

I hope things improve for all of us living and dealing with this.

[darceynjo]

Hi Mumof2girlies, Thanks and it is nice to know that we are not alone in this, did the doctor say how long it would be before things settle down, because I think deep down this can be more ????? Do you get a strange fluttering feeling in your chest eg. think of a straw that is full and you hold it in the middle letting the liquid go in the bottom half then quickly release your hold and the liquid rushes out (daft way of explaining things I know I am sorry) well that is the feeling I get in my chest, not all the time , this doesnt hurt just feels weird. Hope you can understand me lol Julia xx

[Mumof2girlies]

Hi Julia, it is really good to know we are not alone (sad, as it means that somebody else is suffering though). He couldn't tell me how long before it settled down and didn't have an answer for why my arm was hurting. You are right, I think it was clear that there were many inexplicable details and things he couldn't explain away but the key indicators of clots were not there so he was fairly confident that they were not the problem. However I had a read on the website @ Amoobaa mentioned above and the "shush" campaign thrombosis-charity.org.uk/n... and in particular one woman's story after she lost her husband to a clot and how sometimes the typical "clot" symptoms may not be present. I know that isn't re-assuring but it is what we are all faced with whether we have already suffered a clot or not, really sad.

I know what you mean about the fluttering feeling, I experience it as a gurgling sensation, I smiled at your description, my description of it was water draining out of a sink (that last little bit that bubbles up and down before it disappears). Sometimes everything tightens up and if I take a deep breath, the pain literally takes my breath away, its like someone stuck a sharp object width ways into my ribs. When stuff like that happens, it is difficult to reconcile it to the musculoskeletal pain diagnosis as it feels worse.

Hope you feel loads better soon. Yaz.x

[Teresaelliott22]

You are not being paranoid this is so stressful I couldn't breath lay down work are move 3 day's when it went  to my lungs at that time I didn't know I had a DVT until after my appt. I waited until my appt. Date in lot's of pain. The clot has desolved in my lung. But was drom my ankle to my upper thigh and is down down some I pray it is gone on april 26. Prayers to you healing.