Lasting pain

Hugs

by Lavender - 2023-04-04 15:02:39

Sorry. I have no idea what happened but I briefly saw your first post and the reply. I am sorry you're enduring continued pain and suffering. Mentally it's so tough when things don't go smoothly. 
 

It does take time. I didn't feel better til seven months after my pacemaker was inserted. It got better bit by bit. Mine's never moved in the two years I have had it.

Thanks Lavender

by Mariedepauw - 2023-04-04 15:51:11

Hi Lavender,

Thanks so much for your comment and your kind words.

I do still hope that it will get better in time, but since it didn't after 6 months the last time, and is already hurting again after a revision, I'm getting very pessimistic. Your comment does give me some hope. Maybe I do need go be even more patient, I don't know..

hug! 

Dealing with pain

by Gotrhythm - 2023-04-04 16:24:05

I"m no sorry you're having such a hard time.

Unrelenting pain is the most difficult medical/physical challenge there is. The physical part is hard enought, but then it begins to wear us down mentally, and spiritually.

When we can do nothing to fight the pain physically, that's when we must work to preserve and defend ourselves in the mental and spiritual realms.

Do not add the thought/fear "what if it never stops? what if I'm hurting for years?" to the physical pain you already feel.  Those thoughts are natural, but they will not help--they only deplete your reserves further, and send you into an ever more negative spiral. Stop those thoughts. Refuse to entertain them. When they come into your mind, turn your mind to something beautiful and true. Find something outside yourself that speaks to your heart and focus on it.

The other thing I would say is consult a pain specailist. There comes a point when It no longer matters what is causing the pain. The problem is the pain itself. You and your pacemaker doctors have done everything to address the pacemaker surgery issues. It's time to go to someone who can help you address the pain.

 I'm sending you good thoughts and the knowledge that you are not alone. You have develpoped many strenghts through the challenges you have already met. You can and will get through this, and that there are good times to come. In fact, there are good times right now.

Scar on scar

by Penguin - 2023-04-04 18:22:26

Hi, 

I'm so sorry to hear that you went through all of that and that you're still in pain. I can understand why you feel worried that this painful experience may never end. I very much hope that it will end for you soon, but suspect that the area has become highly irritated. I don't know much about nerves in that area, but maybe ask a doctor about this and any ways to calm nerve reactions in the armpit.  

 I can relate to being able to feel a sharp edge near to your armpit. My second device feels fairly similar and I fretted about the pacemaker having moved out of it's pocket initially and was concerned that the edge might come through the skin.  I can still feel the sharp edge, but it hasn't caused any problems and perhaps my experience can provide a little reassurance to you?  

The pain you have may be, as you point out yourself, from the scar being opened up again so quickly after the initial incision and the original area (in your armpit) still being so sore as well.  I imagine that this will take longer than a month to settle down. 

My gut instinct is to suggest that you consult your GP abour healing and suitable pain relief and discuss your fears with the GP about the longevity of this pain. Ask the GP to keep an eye on how things progress and take their advice regarding any long term pain reflief offered as this can brings it's own challenges.  

Many people on here advocate for the use of ice packs rather than more serious meds and for my part I'd add time and relaxation techniques to the list of helpful things to try.   Give it a little longer and please don't panic. There is time for things to improve and panic / high levels of anxiety can make pain feel worse.  Try some mentally soothing activities if you feel panicky or in serious pain and try to breathe through it and re-affirm to yourself that you can and will cope with this and come out the other side stronger and well again. 

Above all else believe in your body's ability to heal. It's done an incredible job to date and you have survived a great deal! 

pain and scar tissue

by new to pace.... - 2023-04-04 19:53:36

You might try acupuncture  for me that helped heal and the pain.

new to pace

Thank you all

by Mariedepauw - 2023-04-05 03:25:11

Hi all,

I want to thank you for all your kind words.

I'm trying to be as hopeful and positive as I can and I really want to believe everything will heal in time and the pain will go away. I'm just really disheartened right now because the last surgery was supposed to fix te pain, and now it feels like it didn't because the same pain I've had for 6 months prior, reappeared now after just a month of healing. I'm going to contact my GP and my pacemaker cardiologist again for help and see what they say.

Another pocket revision in these next few months is simply not an option because the risks for infection were already dangerously high in this revision. But there must be another solution. I can't even wear most of my clothes because they irritate and hurt too much. I'm 29 years old, this can't be my reality from now on.. 

Oh I just want to clarify that a leadless pacemaker isn't an option in my case because once they are in your heart, they are there to stay. And since I'm young I will be needing lots of battery changes in the future and that's nog possible with a leadless pacemaker. And of course they can't just leave them all in there. But thanks for suggesting solutions.

Then I would still like to ask if anybody has had a similar experience to mine, please please please let me know. 

A Really Difficult Process

by SeenBetterDays - 2023-04-06 10:26:55

I'm so sorry you have been through such a lot at such a young age. You have enormous physical and mental strength to get through so many difficult and traumatic experiences. I sense the desperation in your message and the feeling that you are unable to escape the pain that you are currently feeling. I have a scar cut through a scar which has become hypertrophic and is very sore and itchy. The device is also very prominent and have a sharp edge near my armpit so I understand a little bit of what you refer to.  I have had to give up on the bra as it was just too painful and sore having anything in contact with that area. I try to wear natural materials such as cotton or silky fabric which doesn't irritate the skin as much. I have constant discomfort but this doesn't sound anything near as severe as what you describe. I have been told that I could have a sub muscular implant next time or in the event that the device erodes through the skin but I absolutely appreciate that you would not want to put yourself through any further potential surgery at this point. It is definitely too early for you to think that your current pain level will last indefinitely. There is still so much healing for you to do. Try to focus on taking care of your mental and physical health as a way of supporting your body's recovery. I have found meditation and daily walks in nature mentally calming. I also try to eat nutrient dense foods with healthy fats and protein which is essential for the tissues to repair. Rest and sleep is also crucial but I know can be difficult when pain is present. Age is on your side so you have the ability to heal and regenerate much more quickly than someone older. Please don't think this is how it will always be. You have been through a lot and feeling disheartened is completely understandable but you are strong and courageous and can get through this and out the other side. There are lots of amazing members of this club who will help and support you. I am sending you positive thoughts and hoping that your pain will start to ease with time and care.

Chronic Pain

by Drea Marie - 2023-04-07 08:05:13

First of all, I am so so sorry to hear you're dealing with chronic pain issues. I am 36 and dealing with the same problems myself. So I can tell you what I've done that has helped me. I had the same issue with my scar where if anything touched it, it was beyond uncomfortable and painful, I ended up going to a plastic surgeon and getting steroid injections and it helped tremendously!!! 
 

Now, you have to be 3 months out from your surgery to be considered for the injections or possibly longer. You'd of course have to check with your EP or Cardiothoracic surgeon or whoever placed your device. There are sometimes creams they can prescribe in the meantime to help as well. 
 

I've had 8 surgeries in the past 14 months, 3 of those being pocket revisions and the chronic pain is not fun. I'm lucky that I've found a really good Primary Care Physician that will work with my Cardiology and EP doctors to come up with a pain management plan because I will not take narcotics, etc. I've just learned to try and push through it, but it can definitely be extremely difficult. I've just learned what positions are comfortable to sleep in, how to arrange my pillows at night, what bras are most comfortable, etc. 

I really hope you're doing better. It's scary at this age to wonder if this pain will follow you the rest of your life. Hope any of this helped!