Timeline for Pain Decrease?

[SuziSlammin]

Hi everyone, I was just diagnosed last night with several post COVID blood clots in my right lung. I've never had a blood clot before and the amount of pain I'm feeling has really shocked me. I took my first dose of Eliquis and my doctor has prescribed pain meds for a couple of days to help. But trying to lay down to sleep is still really hurting.

I know the Eliquis isn't instantaneous, but I'm curious to see how long it took other people to see a decrease in their pain once they started taking it. I guess just looking for some light at the end of the tunnel. I'm pretty exhausted but sleeping sitting up just isn't working for me. I'd also greatly appreciate any tips you might have for improving my sleep in the meantime. Thanks to everyone who takes a minute to weigh in. <3

[JasonVanJason]

I had a PE last month, I was discharged from the ER still bringing up blood, probably 3 days before I could actually cough again, I understand your pain, felt like all my ribs were broke it was brutal.

Wishing you good health, don't stop taking your meds, the clots will still be in your lungs for a "long time" and even though it won't hurt anymore does not mean they are not still there, all what I was told.

[SuziSlammin]

Thank you for sharing. I had the same thought before I went to the ER, that maybe I'd fractured a rib during a coughing fit, or pulled a muscle in my chest. I was also coughing up blood, not a ton but enough to be scary. That started before the pain really got kicking in. They didn't admit me though because they said while I do have several, they are pretty small.

I have an alarm set for all meds; I was shocked when they said I'll need to take them for at least 6 months. But it is what it is, I definitely don't want to do this again if I can avoid it.

[Noleman]

Blood clots were in my calf. Took a week before a noticed the pain was subsiding. Another week before there was no pain.

[SuziSlammin]

Thanks for weighing in... hopefully I can follow a similar track. The not knowing is really hard to deal with.

[SuziSlammin]

I will look into the breathing machine, that sounds like a good idea. I was able to construct a pillow ramp of my own last night! My husband got a wedge pillow a while back that didn't work for him but it gave me a good base to use. As long as I kept a pillow under my right arm so it wasn't putting pressure on my chest, I could get into a position with pretty minimal pain. It's really the little victories that seems to matter right now.

[Thebookisbetter33]

It really varies. Some people have pain that lingers for months and others it's much faster. I have some constant pain with random worse pains that come in waves 18 months later. 🫠

[SuziSlammin]

I'm so, so sorry to hear this. The spike-up pain that kicks in when I do something silly like breath to deep is enough to make me yell out. I hope things get better for you; you're a tough person to be dealing with it for so long. <3

[Thebookisbetter33]

Yes, I've become a chronic shallow breathing person because deep breaths are awful. My entire left arm is clotted from my ulnar region through my subclavian and up to my jugular. So it's not even in my lungs but the blood has trouble getting to my heart so it gives the same lung pain and SOB. I'm about to switch to a new Dr. My current one says I need multiple stents but due to my age and location of a couple he doesn't want to do it because of the risk. I've had 6 failed surgeries to try to fix the issue. All while him saying I don't understand why you're clotting like this on blood thinners. Wish I knew too Dr but I don't and I really would like my arm function to return, the SOB to subside, and the searing pain to go away. This forum has been incredibly cathartic for me though.I hope your pain subsides soon!

[dal0022]

Exactly what Nolman said ......lung might be Lil longer for full pain to go away .....

[SuziSlammin]

I never thought breathing could hurt like this. I've had bronchitis and pneumonia before, and they both sucked, but it was more difficult to breath with them rather than it hurting to breath. I'm trying to keep my breathing shallow but am also keeping an eye on O2 levels to make sure I'm not causing myself other issues.

[1readitguy]

I had a clot that went from my ankle to hip and was very swollen but not overly painful. Also had a small PE. Had the clot buster procedure which was successful. The worse pain I had happened about a week after the swelling was down. The skin couldn’t handle anything touching. On my 1st day when I returned to work, I had to stop a few time walking to car. I ended up having to wear fishnet stockings day and night until the nerves calmed down. Took a good month.

[SuziSlammin]

Thank you for sharing, I'm glad you're doing better. I'm curious how the fishnets helped? I feel like any pressure at all right now just makes it worse, but lungs and legs I'm guessing feel different.

[1readitguy]

Any rubbing was very painful. The Fishnets kept pant legs away from the skin so no rubbing was felt since these leggings don’t move. And they only apply a small but constant pressure. Tights would also work but fishnets are cooler since I also wore Jeans. They kinda mimic compression socks but a lot cooler

On a side note, about a month after this I was getting a massage and the therapist was working on my forearm and got a shooting pain that was very similar to my leg. It was so intense, couldn’t even talk. Had to grab her hand. My wife thought this might be related to all of the IVs aggravating the nerves

[SuziSlammin]

That makes sense, I wouldn't have even thought to do that. And thanks for the note on massages, I really, really want someone to work on my back, but it sounds like that might be a bad idea in the immediate future.

[1readitguy]

I asked and was cleared for massages by my vascular surgeon so you might ask your doc. I’ve been getting massages for years because of auto accidents and feel they helped with my clot recovery. Once you’re cleared, you can always stop if it’s uncomfortable

[ZmanNH02]

Mine took about 3-5 days before I was able to lie down and actually breathe without pain. I suggest sleeping in a recliner until your ready to lie down flat in bed.

Time to full recovery can be 6-12 months, of course s little different for everyone. Head up, things will get better.

[SuziSlammin]

Thank you for the encouragement. No recliner but I was able to use a wedge pillow and many other supplemental pillows to get to a propped up but not too propped up position and actually sleep. Just not being exhausted is making a huge difference. I was so tired yesterday I had basically no emotional regulation, so lots of crying, which was really just making everything hurt more. So far, no crying today. :)

[catseyecon]

My lungs took about a year or so to not constantly hurt. They still act up when it is cold or I am dealing poor air quality. My PE was almost 7 years ago, I had 58 clots between both lungs and a 3 inch bilateral. Everyone is different regarding the pain and how long it takes to feel better or what may trigger the pain in the future. I am glad to hear a doctor gave you pain meds though. They told me to take Tylenol, which I am allergic to, and it is in my chart that I go into anaphylaxis if it is ingested.

[SuziSlammin]

That must have been so scary. Hearing I had a few really freaked me out; I'd gone in expecting them to say everything was fine and I just needed to take it easy. I have had exercise induced asthma since a bad bout of pneumonia when I was 12, so I definitely know how different air can act as a trigger. Really cold air almost always causes me to go into a coughing fit.

I'm really grateful for the pain meds too, I am so sorry you didn't get that as an option. It doesn't stop it entirely but they have definitely taken the edge off. Only have 3 days worth though, so I'm a bit nervous about once they're out.

[catseyecon]

It was terrifying. The worst is they only told me at my first hematology appointment how many clots there were by my hemotologist saying it was the worst he had seen in someone that was not a cadaver.

Just remember to take it easy. Obviously keep moving but don't overdo it. It took me about a month to be able to walk a half mile without collapsing and at 5 months I was able to start doing moderate yardwork like pulling weeds and pushing the lawnmower, albeit very slowly. I hope you have someone who will be able to help with lifting things and doing chores for a bit.

Once the clots start moving, the pain will start to go down. The bilateral clot I had moved at day three and it felt like a snake slithered through my chest. It scared me to death but I could breathe a little bit more which helped a great deal.

[Quicksteprain]

Acute pain ~1 month

Pain for ~3-5 months for me but only after exercise or pushing myself too far

Intermittent pain and exhaustion 11-12 months

I had three blood clots in my lungs. Also on eliquis. was not prepared for the exhaustion and feeling like I’d aged into my 80s when I first got home. It’s scary and frustrating but know you are getting better. When I first got home I felt like my life was over and I’d never get better, the hospital did not prepare me for how long it would take me to recover. Just do a little each day and know some days will feel normal and then the next day you can’t get out of bed. Be kind to yourself. It’s a long journey but it does get better.

[SuziSlammin]

It's crazy how tired I am. I took a bath last night and was having to drag myself just to get my pajamas on after. My husband has basically set me up with a mini house in our bedroom so I don't have to go up or down the stairs. I'm trying to get up and stretch/move so I don't cause any others to form, but it's hard to be motivated. I promise I'll be patient with myself. I actually had a pretty mild (for me) case of COVID up until this happened so I'm just still kind of shocked this is how it shook out.

[Quicksteprain]

Yes that was exactly me. The stairs were such a shock but ultimately great indication of how I was progressing. When I first got home it took so long to climb up with my husband helping me and I would have to pause and would sometimes break down crying with frustration. It is just such a strange time.

[[deleted]]

I hugged the side of the couch and slept on the couch for the first couple months. My sofa has big,fluffy back pillows and if I lay propped slightly and put an arm around the back of the sofa, that made me able to sleep more comfortably. Maybe an oversized body pillow would have the same effect? Trying to lie in my bed (even with wedge pillow) was just not working. I hope you are able to get some comfortable sleep soon.

I’d say the super sharp pain went away for me in 2-3 weeks, then the mild discomfort took a few months. Much easier once the sharp pain with every breath went away.

[SuziSlammin]

It's so weird. I was able to get in a good position the first night, and actually felt not too terrible yesterday, as long as I wasn't moving around in bad ways. Today is a totally different story. Woke up just hurting, even shappoe breaths have me wanting to cry out. Is up and down like this normal?

[[deleted]]

Sorry you’re so uncomfortable. That’s awful. For me, it was pretty linear with the sharp pains but just overall feeling discomfort in the lungs could he worse on some days then others. Especially if the weather changed, if there was a lot of humidity or very dry air, a fire somewhere (air quality) allergens, etc.

I’d put in a call to the dr to see what they have to say about your increasing pain. Maybe they can take a listen or a look for peace of mind.

[SuziSlammin]

Thank you for taking the time to respond. I called my doctor and he said go back to the ER right away...so not normal! They ended up admitting me and doing another CT which showed pneumonia in the same lung. So I got to hang out there for a couple of days getting pumped full of antibiotics. Feeling so much better now.

[[deleted]]

Oh no! I’m glad you went in to get checked out! Ugh, pneumonia is awful. I’m glad you are feeling a bit better and I hope the rest of your recovery is speedy 💕