Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

update

Nov 05, 2015 2:33 PM

Pain is getting worse. Still no answers. Mom is back at the hospital with me. She was having horrible migraines (she has chronic migraines as well). So o understand. Pain is getting much worse in hands. So I won't be on much, if you want to talk to me its probably best to email me as I can use the laptop for that which is much easier.
Thank you all for wishing me well :)

My email is
Jjabberwocky13@yahoo.com

Nov 05, 2015 2:44 PM

Thanks for letting us know. Sorry that the pain isn't under control. Hang in there.

Nov 05, 2015 6:34 PM

As hard as it will be try and calm your mind. The stress of having your mom ill also is adding to your pain. Just try to rest and breath. It's gonna be alright

Nov 05, 2015 6:47 PM

Love the email Jenna. Thank you for keeping us posted. I don't know you beyond here but truly my heart hurts for you. I hope your momma can relax and that they can reel the pain back. Praying for you. Hugs

Nov 05, 2015 8:58 PM

Hang in there. Praying the right doc will come along that catches what's going on! I'm not much on emailing, but you'll be in my heart & prayers. (((Hugs))) πŸ™πŸŒΌ

Nov 06, 2015 9:02 AM

Jenna, I am so sorry that you are feeling worse. I pray that there is something they can do and figure out what is going on with you. You've been in my daily prayers and we are all standing by to support you. {{{Hugs}}}πŸ’•πŸ™πŸ»πŸŒ»

Nov 06, 2015 10:22 PM

Wanted to let everyone know. Still in hospital. On lots of meds and prob getting shots moved to sooner date. Pain is sadly not any better. New symptoms appearing that caused Dr to start testing for other things. Very scared honestly. I'll let you guys know what the results are soon.
Just used my last spoons to let you guys know :p. I miss you all. Thanks for the support!!

Nov 06, 2015 10:26 PM

Miss you too! Many hugs and prayers good friend.

Nov 07, 2015 6:38 AM

Jenna, I miss you too. My heart aches that you are going through this. I know you're frightened. Know that you are stron and that God will pull you through. Lean on us and know that your pain family is here to stand by your side and see you through this. I'm sending you gentle {{{{Hugs}}}} and you're in my prayers. Keep your chin up Sweetie, this will get better.πŸ’•πŸ™πŸ»πŸŒ»

Nov 07, 2015 6:46 AM

I haven't slept at all tonight bc I was taken off of the sleeping meds because of my heart rate and other side effects. Can't stopo crying from pain. Have nurse in my room 24/7 now to keep an eye on everything I guess. Dr printed out pain drawings and is conceded with the amount of pain and it being all over and with the new symptoms. freaking out.... Wish they would fix all this already. Losing a lot of weight...only 90 lbs...I just feel like I lost all my hope...I don't feel strong anymore...

Nov 07, 2015 7:03 AM

Oh Honey, you are stronger than you think. Try to hang on to what hope you have. There are many, many people who are praying for you and are with you. I wish that I was sitting bedside to hold your hand and try to quell some of that fear. It's good that they have a nurse with you 24/7 because if you need something, you won't have to wait, she is right there to take care of you. Try to find some comfort in knowing the nurse is there to help you, that you have company and that she is a medical person so she is a safety net for you. Try doing some breathing exercises and meditate. Think of the thing that brings you the most joy and peace and focus on it while you breathe, you should drift off quietly to a gentle sleep. I'll be checking in to monitor how you are doing. If it's too much to post, conserve your energy. It's important that you not use up your reserves. You need whatever energy you have to keep your strength up. Keep your chin up, Sweetie.. I know it's hard. Just know that your pain family is here and praying for your recovery. Sending you love, {{{Hugs}}} and prayers (and some extra spoons). I'll be standing by.πŸ’•πŸ™πŸ»πŸŒ»πŸ˜Š

Nov 07, 2015 7:09 AM

My nurse just offered to play uno with me :) she is really nice. Going to play uno till I get tired. Thank you so much always. I started tearing up from that.

Nov 07, 2015 7:10 AM

No worries Jenna. I'm here for you (as is the rest of the family). You enjoy your Uno game with the nurse. I'm glad she's nice. It helps when someone kind is with you. I'll check up on you later Love.πŸŒ»πŸ™πŸ»πŸ˜Š

Nov 07, 2015 9:17 AM

My little girls and my fav game 😍 hang in there honey. Wonder why dr. didn't medicate you for sleep. Praying for you!

Nov 07, 2015 9:30 AM

They had to stop her sleep meds because they were dropping her heart rate too much.

Nov 08, 2015 8:55 PM

Jenna, I wasn't online yesterday. I'm so sorry for what you're going through. It always gets worse before you get better. You are stronger than you think. When you feel you can't hold on, grab onto God and all of us. God says, if he brings us to it, he will bring us through it. By your getting worse the doctors are really paying attention. Pray and trust.They will find the answers and get you the help you need. You have too many of us praying for you! Lean on us; we are here always. (((Hugs))) & virtual βœ‹ to hold! πŸ™πŸŒΌ

Nov 08, 2015 9:22 PM

Thoughts and prayers with you. Hoping you get the answers you so desperately need.

Nov 09, 2015 3:48 AM

Jenna, still praying for your recovery. Sending you gentle {{{Hugs}}} and as Flappsy said, There are many of us praying for you and to lean on us. We'll always be here for you.πŸ’•πŸ™πŸ»πŸŒ»πŸ˜Š

Nov 15, 2015 11:52 PM

I hope you get better soon because you shouldnt have to go through this. Im dealing with a frozen shoulder which means my dominant arm is numb and weak and can hurt bad. I also have bad upper back pain too. Both are chronic issues unfortunately. Pain meds are not working for me either so I hope the mri helps. Im waiting to be scheduled for an mri hope to here on that monday. My email is battylol@aim.com if you want to email me. :)

Nov 16, 2015 1:02 AM

Jenna honey I am praying for you and for the medical professionals caring for you. Hang in there and try to get some rest. I am there in spirit!

Nov 16, 2015 9:50 PM

NEW UPDATE:
doctors are starting to give up, nothing is helping the pain. The pain is a 10/10 even though every day it gets more painful. I feel like I'm at a 20+ pain...idk...shots in a few days...but they have never worked...they said they need to keep me still because how sick I am. Still unable to eat. No longer am sleeping once again. On a bunch of IV meds that make me loopy. Migraines are coming back.
The worst part for me though is I am having flashbacks again(i have PTSD) the flashbacks are so intense...they last for up to an hour. Even Dr have a hard time getting me out of them. When I have flash backs my body spases which causes my body to hurt more and cause more injury's...I don't know what to do anymore...I feel like giving up...I'm 18 years old....completely bed ridden...tubes down my throat, down my nose, IVs on my arms and hands, so many wires hooking me up to monitors....I want to give up...

Nov 16, 2015 9:53 PM

Please dont give up.you have a lot to do so although it's hard more then hard you have hold on.

Nov 16, 2015 9:55 PM

Doctors don't even think they can lower my pain anymore....how am I suppose to ever live my life like this....I can't stop crying honestly....

Nov 16, 2015 9:55 PM

Baby girl I don't understand your pain, but I can understand you wanting to give up. You still have many more years to go, hopefully they will be as painless as possible. I will see if I can just send you that book to your direct email. I really want you to read it so maybe it can give you some hope.

Nov 16, 2015 9:56 PM

Rocky's, I forgot to email you about that. I can't seem to get into my kindle account at all. So my dad is currently setting me up a new one soon.

Nov 16, 2015 10:01 PM

Ok babe just let me know. I know it's hard but keep your chin up. Sending hugs, love and prayers your way.

Nov 16, 2015 10:08 PM

Jenna honey, I hear you, I hear your pain and I hear your frustration. I am so very sorry that life is filled with so many challenges right now. Please don't give up. When you are more medically stable there will be treatment for the PTSD that can help you stay n the here and now. It's not surprising that the PTSD has reared its ugly head right now, it always seems to be worse when we get stressed. When you feel better and are ready, if you want, I can help you find a therapy that works for your PTSD. For now just hang on. Cry if you need to, get mad if you need to. I am here and I care.

Nov 16, 2015 10:18 PM

I just don't know how to feel anymore...ya know?
There's just so much going on, and so many emotions...plus the meds are making me confused often so that's not helping...idk..I feel like I'm running out of tears at this point. I've been calling my mom all threw out the night for the past week...waking her up...because I just want to talk to someone...I feel so lonely...and idk..I feel needy I guess. I just want someone to talk to and its scary being so far away from the people I love...

Nov 16, 2015 10:25 PM

Sweetie there is nothing to be ashamed of. No one could do what you are doing alone. Is your Mom still there?

Nov 16, 2015 10:58 PM

No she can't stay the nights. Its too painful for her to sleep on the chair in my room. :/

Nov 17, 2015 3:43 AM

I'm sorry. My daughter and I were at Menards last night and we saw this sign it said "It doesn't matter how old you get, sometimes you just need your Mom". I looked at my daughter and smiled and she said "It should say Mommy..." I love that sign and my daughters reaction was so sweet. Even with your Mom not there you still are not alone. I am sure you are in her thoughts constantly. I am praying that you are sleeping right now and won't see this until morning. I am sending you healing, loving thoughts and am there beside you in spirit. Rest sweetie and heal. Lori

Nov 17, 2015 8:01 AM

Jenna, I'm so sorry you are still suffering so badly. Have the doctors thought of sending you to a specialist hospital for difficult cases, like Mayo & others like it? I'm praying for you, that God gives you strength to Keri fighting, and that the doctors will find the answers & treatment. Look into the following information, and show it to your doctor if you think it might help. πŸ™πŸŒΌ

http://www.instituteforchronicpain.org/understanding-chronic-pain/what-is-chronic-pain/central-sensitization

Nov 17, 2015 7:38 PM

Are their any hospitalslike that in Ohio flappy? The problem is I've been sent to a special hospital 3 years ago in new York that couldn't do anything to help. And I just don't want to go three that again...ya know?. Thanks for the link though. I'll go look at it.

Nov 17, 2015 8:37 PM

I'm not sure about Ohio, but there are several in MN. I'm praying you will get answers and a resolution soon! πŸ™πŸŒΌ

Nov 18, 2015 12:03 AM

I have PTSD as well and flashbacks suck. Try to distract yourself somehow so you dont focus on them. Can u have a stuffed animal? They help me out when im lonely. I chat with it and just cuddle it so im not alone. I'm sending you hugs. :)

Nov 18, 2015 12:10 PM

Jenna, I am so disheartened to hear about your worsening condition. I wish I had some miracle thing to say to you. Please do NOT give up. I know it's easier for us to say to you than for you to do. I have to say, I don't understand why the doctors have not sent you to a specialized hospital or (I know this will sound scary), put you in a medically induced coma so they can get you out of pain and figure out what the hell is going on. I have been praying for you and I am sending you {{{Hugs}}} and prayers and also love to give you as much support as I can. God will see you through. Hang in there, Jenna. I wish I was there to sit next to you and hold your hand. Just know that the whole pain family is here praying for you. One moment at a time.πŸ’•πŸ™πŸ»πŸŒ»

Nov 18, 2015 2:12 PM

Alwayz, they have suggested the coma twice, I keep saying no...it's just too scary for me honestly

Nov 18, 2015 4:38 PM

I'm so sorry they have not been able to figure it out yet. I am praying for u honey.

Nov 18, 2015 4:51 PM

Jenna, I am sorry I have not been keep up with a lot on here and I am so sorry they have not found the source of your pain. Your in my prayer's and I'll try and keep up better with this thread.. πŸ˜˜πŸ™πŸ’•

Nov 18, 2015 6:57 PM

Today has been a horrible day :(
I had different doctors coming into my room all day today. Taken off half of my medicine because nothing is working so they say there's no point in being given them. I got a 100 more tests that all say nothing. Doctors don't know what to do about my pain. My one nurse said that she hasn't seen anything this bad.
Doctors have been discussing other hospitals, problem is both hospitals discussed are all the way on the west coast. I'm in Ohio there's no way I'd make it going out there let alone my mom wanting to leave my 12 y/o sister to go with me. So much happening at this point. I told my main doctor to just do whatever he thinks is best and I'll just sign off on it. Idc what is done anymore...its been weeks since I've gotten into the hospital, and it is worse than when I got here. So whatever he decides I'm agreeing with.

Nov 18, 2015 8:01 PM

Jenna I am so sorry that you are going through all of this. I haven't been on here for a while. Don't give up , I know it is hard going through so much pain with out any relief. But God is right there with you and he won't leave you. Just hold on to your faith. I pray that the Dr's will find something that will ease hour pain,and find out what is causing this flare up. Sending you lots of hugs and prayers. Ask your nurse if they have people that bring their Therapy dogs for visits with patients. It might help u out get a little rest.

Nov 18, 2015 11:33 PM

Are they offering you the ketamine coma there? If so it would be tough to decide. I am so sorry Jenna. This disease is awful

Nov 19, 2015 12:44 AM

Ptsd ughhh.... the panic attacks, being afraid, nightmares I have multiple issues that have caused me to finally break. I am aggressively medicated, according to the psychiatrist, for it and it still is not working.

Anyway in therapy yesterday it was suggested to focus on repetition like if you are out finding all vehicles one color then going on to the next. Inside you could find objects the same. The idea is to focus on something else. I understand the theory want to try it for awhile before weighing in on it.

Nov 19, 2015 8:41 AM

Jenna, I am so sorry if I upset you. I was just wondering about the medically induced coma because it gives your body a chance to rest and recuperate as well as being able to bring your pain levels down while they search for a solution to your specific situation. I pray for you daily, Jenna, and I know that God will be by your side (even if you feel like he isn't right now). Don't just agree to anything the doctors want because it could be to your detriment. Sending you gentle {{{Hugs}}} and love and prayers to give you some support. I wish that I could be there by your side to try to offer you some comfort.πŸ’•πŸ™πŸ»πŸŒ»

Nov 19, 2015 11:50 AM

Jenna, my heart aches for you and I wish I could be there with you. Maybe the other's ideas of a medically induced coma would be helpful. Mention it to your doctor and see what he thinks. I can't believe there isn't a hospital closer to where you live. I'm praying for you, that the right doctor will find the right answers. (((Hugs))). Know you are not alone. God it's with you, just reach for Him. And we are all with you in our hearts. Sweet girl, don't give up! πŸ™πŸŒΌ

Nov 19, 2015 5:13 PM

Jenna, honey, I sent you an email. I had been thinking about a medically induced coma also. They don't have to put you under very deep. And it will allow your brain and body to try to reset itself. Think about it and talk to the Drs. And don't forget, the nurses can and will be your biggest source of information. Talk to them. I know it's scary, but at this point, it may be the only thing left to do. I'm here if you need me. You have my number. Use it if you need to or want to.

Nov 19, 2015 6:05 PM

Jenna are they willing to do it? That would be huge if so! It's not done yet where I live. I just believe something is missing and the doctors will find it. I also believe in the power of Jesus. He reminds me daily that this life is a blip in the thousands of years in heaven. Even when we feel we have no purpose he reminds us that we do. Just by being - he told the early church Over and over don't be afraid I know what is about to happen to you. He even said he who overcomes will not be hurt at all in the second death(afterlife) I don't know what he has in store but by being you impact many. My heart and prayers are for you

Nov 19, 2015 6:36 PM

Jenna, I know your scared and hurting because the doctors don't know what to do next. It's easy for all of us to tell you not to give up and don't be scared. Let me tell you about a brave person, my Aunt. You see she has 3 life threatening heart issues and now cancer. Her doctor's sent her home on hospice and I asked my aunt today how she could be so calm about everything and she said because God had a plan for me and now that I have fulfilled his plan for my life he has my home in heaven waiting on me with my 2 sister's who have past before me and mother and father, it's time for our family reunion in heaven. God still has a plan for you, your not done yet, ask God for guidance on this and the sit back and let God carry you through this.

P.s. look up on YouTube by Casting Crowns a song called Just be Held.

Praying for you JennaπŸ˜˜πŸ™πŸ’•

Nov 19, 2015 7:04 PM

Jenna, I second what Mopar said about Just be held. There's also another one that is my favorite and that is "Praise you in this storm." Prayers going up.

Nov 19, 2015 9:58 PM

Moparmom, I teared up reading your Aunt's words, so true and beautiful. It reminded me of my grandmother's statement from her hospital bed, when she woke up smiling. When I asked her what she was smiling about she said, "Because I just saw Jesus and he's waiting for me. I saw my brothers and parents waiting too. I'm going home soon." She passed the next day. πŸ™πŸŒΌ

Nov 19, 2015 10:40 PM

Jenna sweetie, I am so sorry you are miserable and no one seems to be able to figure it out! It does seem that it is time to go somewhere else to get a fresh set of eyes on you. Sometimes that is the key, docs are taught that if it sounds like a horse, looks like a horse, and acts like a horse don't look for a zebra. Well, you seem to be a Zebra! You need a doc that's not afraid to think zebra. I continue to pray for you. Take care, rest when you can, and know ur pain family is with you.

Dec 03, 2015 7:23 PM

On Jenna, my dear. I'm so sorry to just be finding out about this now. I have been thinking about you. I hate that you're going through this, sweet girl

Dec 03, 2015 7:34 PM

Kitty, this is an older post, sadly things have gotten much worse

Dec 03, 2015 7:36 PM

Oh no, Jenna!, what's going on? You wanna email?

Dec 03, 2015 7:37 PM

Kitty, go to the topics "really long post about nothing", and "hello my wonderful pain family" it explains it all, its just so much to type again baha

Dec 03, 2015 7:38 PM

I totally understand thanks for pointing me in the right direction, dear

Dec 04, 2015 7:07 AM

Jenna, still praying for hub. I really pray that things get better for you.πŸ™πŸ’•πŸ˜˜

Dec 04, 2015 9:23 AM

How are you doing today? Any new news? Are you close to the Cleveland? I hear there are some great doctors there. Hugs

Dec 04, 2015 9:27 AM

I'm actually at the Cleveland clinic lol.
I live 10 minutes from the main campus.

Dec 04, 2015 9:28 AM

But I'm going to be posting a new topic soon about what's going on. Some stuff has happened since last big topic post.

Ready to start relieving your pain?

Join Community