The pain is getting worst, any advice welcome please

Chest and lungs
1

Hi,

My Massive saddle PE was found on the first of April and I was given IV thrombolytics, which I was told saved my life, I was in hospital for 10 days and was put on Rivaroxaban and my pain medication started at a low doge of 30mg of Zomorph (slow release) twice a day, morning and night and a break through pain relief of Oramorph. 600ml per month, 5-10ml ever four hours or as needed.

Sorry I will try to keep this short,

Last Sunday we had visitors and to be honest I hadn't realised that talking for a long time would have any effect on me but within approx four hours the pain across my lungs, in the back and by my heart was so bad I was in tears.

I took 10 ml of Oramorph and found this would only hold the pain off for approx two hours max, I did ring my GP to ask for advice, who put my slow release up to now 40mg twice a day and said to just take the Oramorph as needed and she would be out to see me on Friday.

On Friday I was told that my Zomorph will be increased until they get the right amount to stop the pain and to keep taking the Oramorph as needed plus she has started me on another pain killer Pregablin 50mg twice a day but like the Zomorph this will increase as I need it.

Which is why at the moment my dosette packs are weekly as my medication is changing constantly.

I'm so sorry this is long, 

But the pain is still here

 infact it is waking me through out the night, last night I was just in tears as I couldn't move from my bed due to the pain and one of my German Shepherds kept coming up to me licking my face, I just thought is this it.

My doctor is due out again Friday and I've got a full body CT scan tomorrow at 3pm.

Is this amount of pain normal?

It's just it has never been this bad, when I first was ill. I had no pain, just couldn't breath and felt light headed but this pain is so bad I'm unable to move or concentrate on a book. Sometimes I wonder if I'm actually having a heart attack it's that bad but all my doctor is doing is keep giving me tablets, which I'm grateful for but can anyone help to explain why has the pain got this bad after so long from me first having the PE?

also why am I getting given so much morphine?

As surely the amount I'm taking can't be good and I don't want to become addicted to them but I want this pain to go away.

I'm sorry as I'm crying again as I'm  in pain again and I'm just like how long can I cope with this.

My son tells me to just call 999 but I don't want to be a  nuisance, so I try to sleep, which you'd think with the amount of pills I'm taking I'd be knocked out but I can't sleep.

Any advice I would be grateful for as I just don't know anymore what to do.

2

Hi,

Take your sons advice and call for an ambulance, you sound as though you need urgent care. pregablin sounds familiar, that isn't Lyrica is it ? personal choice but stay clear of Lyrica.

If you need to know more about Lyrica ask to join a closed group on Facebook called Lyrica survivors.

I hope your pain is subsiding with the increased pain relief but I definitely would be taking your sons advice in calling for an ambulance.

3

Dear Elizabeth, I'm sorry you're going through this. It's so awful I know. It is a little odd that you are having more pain now than when you were first diagnosed, I know the recovery process is long and slow and also the pain can come and go but I'm not sure it should be worse. 

I think having the CT tomorrow will be good and show if the clots are being absorbed by your body or are still there. I had my scan abdominal/ pelvis scan just over a week ago and the clots were still there, also have lung infarction in both lungs. I really think if you are worried about the pain don't hesitate to call 999, I called 111 2 nights ago because I had central chest pain and could take a deep breath, they sent out a paramedic who wanted me to go to A and E, I really didn't want to but was taken in by ambulance , had bloods taken waited 5 hours and doctor said it was probably a recurring pain from original clots ( diagnosed 3 weeks ago ), she said if I am at all worried to just come in and get checked over, you're really not being a nuisance because PEs are very serious. I know that my anxiety is definitely heightened now. Please just don't put up with pain for fear of being a nuisance, you have a very valid reason to call emergency if you're at all worried. 

I know it can take months for our bodies to get back to any kind of normality. 

Sending you lots of positivity and pleas keep me updated. 

P

4

Hi Elizabeth, i am so sorry to hear that you are going through all this pain. As the vast amount of tablets you are taking dont seem to be helping i really do think you should go to your local A& E as this is not right xx

5

Hi,

Sorry I actually fell asleep.

Yes it's Lyrica but it's only a small dose my gp said to start me on 50mg twice a day and to increase it as or when I need it as she thinks my pain could also be due to my anxiety, which is why she has prescribed this and also increased my morphine.

I haven't taken it yet as we live in a small village and our nearest chemist didn't have it in stock until Monday, so that's when I'm supposed to start it, but my eldest son did mention something about it yesterday but he said he would explain more tomorrow as he is taking me to the hospital.

But I'm also on diazepam plus Amitriptyline & the highest dose of Mirtazapine plus other medications,

So I must admit I'm worried about adding another new one to the cocktail that I already take.

I will have a nose on Facebook for that page and yes I think if it gets like it did last night I will call a ambulance but I'm hoping the CT scan might show me or more importantly the consultants/doctors what's going on

Thank you for your advice and you've got me intrigued regarding the Lyrica.

Liz

6

Elizabeth,

I had bad pain after I was put on Riveroxaban, not at first, but after a little while. Nothing touched the pain and I had to resort to using my hands to move my legs, as the pain of moving themselves was too much. I had pain in knees, neck, up and lower back etc. etc.  Once switched from Riveroxaban to warfarin, the pain went. Many of the areas were sore for weeks afterwards (inflamation maybe?) but the pain was gone.

I am not saying it is the riveroxaban, just that it could be and just upping the pain meds isn't getting to the root cause. I agree with the others that the best place to go is a&e.

all the best

Peter

7

Thanks hun,

But honestly when my PE was found,

I didn't feel any pain at all, just light headed and hard to breath but no pain.

Infact I'd broken my ankle two weeks previously, so my leg was in a cast & I was using a Zimmer frame, so I just thought I was light headed as I hadn't eaten for a few days as it was too hot to eat and out off breath due to using the Zimmer frame and in fact if it wasn't for my eldest son visiting that day,

I would of probably just led down on the sofa and not woken up.

As I wouldn't even let my son call 111 as we were watching the new 24 episode & I said he could when it had finished as it's nothing, it's probably just a chest infection or something.

As you know the rest is history.

I was told if we'd left it 40 minutes later I would of died and I must admit I still to this day thing it's surreal as you hear about it happening to other people but don't think it could ever happen to you.

Which is why I'm finding the pain hard to understand and cope with.

Thank you for your advice 🌺

8

Did they do an ultrasound on your ankle calve ?a very high possibility that a clot may have formed there Elizabeth.  Anxiety can play havoc after something like this.  I have read some bad side effects from rivaroxaban too. I hope you'll feel better soon. 

all the best 

P

9

Sorry forgot to say hun my blood clot was a massive saddle one.

Which means it lies across both lungs,

Looks a bit like a long red snake like clot, which I found images of one on google.

so hopefully it has reduced in size but I will be on Rivaroxaban for life just because of the size of it. 🌺

10

Hi Debby,

Thank you for your advice,

If it happens again at night I will call 999,

I certainly will be mentioning the amount of pain I'm still in tomorrow to my consultant when I go in for my CT scans.

Thank you again 🌺

11

Hi peter,

Thank you,

I'm sorry to hear you were in so much pain.

I will certainly mention the Rivaroxaban to my GP or Consultant tomorrow as like you said it could be the medication and it's worth mentioning as if it is the Rivaroxaban then topping up my pain medication is not going to help.

This is why I was thinking last night could it be a heart attack as surely I shouldn't still be able to feel the pain with all this morphine I'm taking.

I'm still in pain but I must admit I've taken so much Oramorph today, I'm slightly dizzy but the pain is still there but I can ignore it at the moment at least.

Thank you again for your advice 🌺

12

Hi,

No they didn't do a ultrasound on my ankle,

 but they do think that a DVT came from my broken ankle and it was because of being on bedrest for over a week, which caused the blood clot to move, I'm not sure on what the technical word for it is.

Thank you again 😊

13

Xarelto , that's rivaroxaban is it ? If it is indeed Xarelto I had to be taken  off that, I was calling an ambulance everyday with central heavy to crushing chest pain, the nurses believed me when I told them I knew what was causing the daily trips to emergency as I did a little experiment, none of the doctors would believe me and I had a cardiologist tell me he thought my symptoms were all psychological, In the end my GP had taken me off Xarelto and put me onto Pradaxa, daily visits via ambulance to emergency stopped after ceasing Xarelto. Chest pain is listed as a side effect and if experienced you must be seen at your nearest emergency department, I even rang the company that makes and markets the drug and I was informed it is an emergency listed side effect but was a rare one.

14

That's the same as me, I felt no pain, well nothing PE pain related, I did have a sore calf muscle which I and my GP were treating as a pulled muscle, didn't hurt to touch but was extremely sore to walk on and was puffed up, red and hot to touch.

I was in emergency at the time with my normal prinzmetal angina pain and I made the paramedics aware of my leg as they asked why was I limping and walking slowly, they informed the triage nurse and she came out and had a look and she said to me that she was actually more worried about my calf muscle (leg) more than my angina pain, and as we say the rest is history. Sure I felt the increased breathlessness but no sharp, stabbing or burning pains in the chest or back, didn't even hurt to breath, I just put the increased breathlessness down to my angina getting worse. I was diagnosed with PE's around 4 months ago.

Up until a fortnight ago is when I started experiencing the sharp pains in the back and it hurt to breathe, not all the time mind you just every now and then, although I have had a dry nagging cough , non productive just before I was diagnosed as having the clots in both lungs. I mentioned this to my cardiologist last week that I was feeling dizzy, still breathless and starting to actually feel some of the P E text book pain, he requested a VQ lung scan Friday just gone. Last night , well early hours of this  morning I had to call an ambulance because I was experiencing both lots of pain, my angina pain and the pains in the back, (which occasionally occurs with angina as well) it hurt to breathe  and I was getting dizzy and breathless even just by coughing. The emergency doctor had asked if I have had my follow up with my cardiologist, I knew straight away that something was amiss with the VQ scan as I had only had it on Friday and I was in emergency 12.30am Monday morning, actually not long after replying to your first comment last night , by the time I arrived at the emergency department it was 12,30 am. The doctor didn't let much info out but there was some kind of abnormality found in the VQ scan, I can't remember his exact words as he used rather large ones and because of the early hours of the morning with pain makes it a bit hard to remember things smile , anyrate it can't be anything serious as  it is now 1.26 pm Monday now and cardiologist or my GP haven't rang for me to go see them.. I can vaguely remember him saying the clots were still there from 4 months ago, cardiologist was telling me that I should really be on warafin and not the newer NOAC family of blood thinners, due to the type of clots, I didn't think one clot could be different to another clot, I thought they were all the same and that was another reason for him requesting the VQ scan to help him determine the medication that I should be on. After the information early hours of this morning it seems as though he may well be putting me on warafin.  

15

I'm so sorry to hear this,

You must of been so scared,

I know I would of been,

plus not hearing from your cardiologist or GP is something else I would be worrying about, I know like you said that it can't be anything important as they haven't been in touch but I know if I was you,

I'd feel better knowing one way or the other what is going on with your body. 

Like you I'm the same at night with the medications, I don't really listen or more than likely not really even on this planet as I'm dopey when half asleep, adding to that the pain you were in, it's no wonder you didn't take everything in what people were talking about.

I hope it's all sorted out soon and your pain goes or is at least manageable.

My thoughts are with you.

Please keep me updated if you don't mind on how you get on and when you do hear from your doctor.

Warmest wishes 🌺

16

Hi Elizabeth,

My PE event happened after spinal surgery in 2009. My pains have been constant and of varying intensity, breathing, walking, sleeping has been really difficult. I have been prescribed with nerve drugs and strong painkillers. Some Doctors do not understand the devastating effect some people have to endure. Thanks for sharing your information. Regards Keith.

17

Hi keith,

​May I ask what nerve drug(s) you have been prescribed ? Please don't tell me  it is Lyrica, That could be the root cause of all what you are experiencing now, lots of people respond well to Lyrica but on the other hand lots of people have really bad experiences with this medication, it's actually used for several conditions such as panic / anxiety, neuropathic pain, seizures are it's primary use, the rest was stumbled across accidently. 

​As for pain killers we have to be careful with these as well, yes they do their job well, however, as we tend to rely on them they start not to work and so it's bumped up more to get that desired effect again, this can be a huge issue for lots as it can lead to addiction , I have even heard Lyrica can be addictive. 

18

Hi Samuel, thanks for your reply. I take amytriptiline for my nerves and tramadol as a pain killer. I also take naproxen for spinal pains because I also have yet another spinal problem to deal with.