Breathlessness

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Hi everyone, it been 6 weeks now since my PE was diagnosed still not at work and still needing crutches for my pulled ligaments in my foot. Getting low in mood as recovery is taking forever. Yesterday tried to hoover with the help of 1 crutch hopping around I had to stop I was so breathless made me panic a bit in the end I wasn't sure if I was hyperventilating . Just wondering if anyone else still feels the same just seems like normal everyday tasks are still undo able at present . Love to hear how everyone else is getting on

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  • Posted

    Hi Tina

    From what I have gathered, since my PE in Jan of 2015, recovery is often a long slow process.  It's not just the physical side of it either - there is also the emotional and psychological trauma of having such a serious and scary thing happen.  When I was initially in hospital I was told to expect six months to return to full fitness but recently I had a long chat with my GP who said that was optimistic and he felt 18 months was more realistic!!!  We are all different though and I guess we just have to be patient, listen to our own bodies and not overdo things.  Six weeks is not very long, perhaps you are trying to do too much too soon?  Difficult I know for some of us who do not have help and just have to 'manage' everyday tasks.  (I too have had the breathless/hyperventilating panic attacks and convinced myself I was having another PE)

    With very best wishes for your continued recovery.

    Alex x

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    • Posted

      Hi again

      I have continual chest discomfort which is my main concern.  My consultant has considered pleurisy and scar tissue as causing it but discounted both of those causes tho cannot offer any other explanation.  Also get breathless walking up hills or long distances.  Am on warfarin for life and now find my hair is thinning and falling out in patches!  I have only been seen once by the specialist since leaving hospital but I do have my second appointment this Friday and I have a long list of questions that I want answers to.  I want to ask about changing to Rivaroxoban or another type of anti-coagulation meds.  I also would like to have another CT scan so I know what the state of my clots now is...I feel it would be so much easier to deal with all this if I just knew what I was dealing with...think I may have a battle on my hands there tho as they do not seem to do follow up CT's as whatever the outcome is it would not change the treatment!  Was your PE provoked?  Do they know why you had it?  How are you being treated?  Are you on anti coags permanently?

      A x

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    • Posted

      Hi Allexie, Just a small thing but about the hair loss with Warfarin, my son was on it for months and is due to go back on it soon for 6 months after a stenting op in his leg to sort out post thrombotic syndrome. I did some research online and the best advice is to take B vitamins especially Biotin. These essential vitamins encourage recovery of hair, skin and nails. I'm sure they did him some good so worth a try.

      Good luck.

       

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    • Posted

      I was suffering from swollen feet and ankles the doc put me on water tablets three days later I fell down the stairs and was unable to walk a week later had PE they blame me being immobile from the fall but I don't know makes u wonder if swelling before had something to do with it. I'm on rivaroxaban you don't have to have blood tests with that. I was told you gave to weigh up side effects of drug when taking for life. I'm taking mine for 6 months and don't have a follow up appointment not sure if they will send one. I have two cousins who I don't see and heard last week one has had two strokes and the other has a blood clotting disorder so going to ask if I'm more at risk. I know they can do a test to see if you are more prone to them not sure what this is though
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    • Posted

      Hi Tina, Definitely get checked for blood clotting disorders, I'm surprised you haven't had blood tests already. Some problems have a genetic link so affect family members. See your GP and ask for answers, it's quite usual for factors to go un noticed until something goes wrong and they cause symptoms. Underlying causes of DVT or PE need to be investigated.  Good luck.

       

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  • Posted

    Hi :-) I've finally made it back to work on reduced hours 12 weeks and 2 days after being diagnosed with my P.E.! There is no way on this earth I would have been ready at six weeks. Listen to your body, push yourself within its limits and don't beat yourself up for not being as far on as you feel you should be! I bet yopu can do more than you could when it happened so imagine what you'll be able to do in another six weeks! :-)
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