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Dec 01, 2015 6:12 PM

I don't really know what's going on, I have been crying for an hour and having panic attacks along with flashbacks, I don't know why I'm upset. I just feel like I'm going crazy. I have been having "pain enduced hallucinations" of shapes and shadows at night and they are getting to me really badly. I just really need someone to talk to, and my mom isn't hear, I don't want to bother my bf while he is hanging out with his friends...and talking to my nurse that's in my room isn't as personal I guess. Idk im just really freaking out right now. I'm at the point right now where I just want to talk. I can feel my heart jumping out of my chest :( I want this anxiety to end.

Dec 01, 2015 6:50 PM

I really wish I could help you.
Unfortunately all I can do is send you a virtual hug (hug) and let you know I'm thinking about you.
I have to go back to work now. Sorry

Dec 01, 2015 6:54 PM

Thank you gotobef.
I just feel so alone right now

Dec 01, 2015 7:50 PM

Jenna, I've had pain caused hallucinations and anxiety, and it's horrible. I'm sorry you're dealing with this. It might also be pressure of surgery, and then the possibility of running out of options.

Dec 01, 2015 7:54 PM

Jenna hon what's going on? I'm here. Just take a deep breath. If you need to call me please do it. If you need my number again let me know. I'm right here

Dec 01, 2015 8:07 PM

Jenna, I'm here. You aren't alone.

Dec 01, 2015 8:10 PM

Cearea, would I be able to text message you? Its just already 9 pm here and I don't want to be talking since I am in a hospital. I do have your number saved in my email though

Dec 01, 2015 8:11 PM

Yes honey. Absolutely!!!

Dec 01, 2015 8:12 PM

Thank you my area code is 216 so that will be me

Dec 01, 2015 8:18 PM

Jenna, you are never alone. We are here standing in the gap.

Dec 01, 2015 9:16 PM

Jenna, you aren't alone. I do have to turn in because I have to be up early. But you are in my thoughts and prayers. Please let the nurse know because it could be a side effect of your meds, and they may need to make an adjustment. (((Hugs)))! And I'm glad Cearea is available tonight... Thanks Cearea. I'll check on you in the morning Jenna. 🙏🌼

Dec 01, 2015 10:32 PM

Hey Jenna, I'm 21 and kinda going through the same thing right now. My pain Doctor thought I had shingles because I had all the symptoms, so I went to the ER today and I don't have shingles. I know this life is very confusing and hard to deal with but we can figure it out together! I get tremors all over my body so bad that everyone I meet asks if I'm cold an need a blanket. It very annoying going to the doctor and they don't really seem to help you, but that's where your strength and determination comes in play.
I haven't been able to keep down food for over a week so I drink protein shakes and throw up every hour or so from the pain intensity.
I know it can get worse from here so I try and think that I'm okay because I'm able to move all my limbs still even though it causes more pain.
Keep your chin up we are here for you 🙂 lets get through this together!

Dec 01, 2015 10:38 PM

Jenna, I'm with FlappysLady, I think you should tell your nurse right away. I'm concerned that you're having an adverse reactiin to your meds. I'm saying a prayer for you hon.

Dec 01, 2015 11:25 PM

Jenna, I agree with FlappysLady and sleepingbeauty, I truly hope you spoke with your nurse in the event of an adverse reaction to your medication.
I am glad Cearea was able to be there for you, I didn't have service earlier to get the messages, though if you would like, I would also offer my number as another contact source so you are not alone. I will leave that up to you. Gentle hugs for a restful evening.

Dec 02, 2015 4:22 AM

I'm not really sure how to send you a message on here, as I'm quite new. But if you know how to, please send me one! I'm sending you hugs xo

Dec 02, 2015 6:43 AM

Jenna, I'm sorry I passed after 2am because I have to do a staff meeting this morning. I tried to send you a message by clicking on your name, but it said you had an older version of the app. If you would prefer my cell number I'll do that. In my practice I don't always get service so the app doesn't always come through

Dec 02, 2015 6:47 AM

Jenna, I'm so sorry I just saw this, aunt and daughter have kept me busy yesterday and I wasn't able to get on, I pray you got some help and sleep, as sleep helps the body rest. Praying for you hunny. I can't imagine what you must be feeling. Prayers, love and very soft hugs🙏💕😘

Dec 02, 2015 7:29 AM

Jenna, I'm sorry you are having such a horrible time. I think that the stress of being in the hospital, not feeling better, pending surgery, being anxious and afraid all add up to what is causing your current situation. I so wish that I was bedside so I could hold your hand and settle your soul. I can't imagine how lonely you feel and I understand that speaking to the nurse doesn't bring you the comfort of your family members, your bf or one of us. I hope that you were able to get some rest and that you were able to stop crying and relax that anxiety some. I don't have direct messaging but my email address is Ladygirl

Dec 02, 2015 7:33 AM

Oops.. Hit the wrong button.. LOL! My email address is Ladygirl94@aol.com. Please feel free to send me an email and I'll give you my cell phone number so you can call or text me whatever the day or time. We are all here for you!! (By the way, anyone else want to email me and need it, I'll give you my number as well). I am sending you positive vibes, much love, gentle {{{Hugs}}} and prayers that this nightmare is coming to an end and you get to be home where you can be comfortable. Keep strong, lean on us and know that God will see you through all of this. You got this!! 💕🙏🏻🌻

Dec 02, 2015 8:34 AM

I just got my cell phone off the charger and read all of these. Thank you all for being here for me!!!!! And anniegst that's strange bc I update it any time there's an update and I private message people often. Cearea was very helpful last night and I was able to calm down abit. I talked to the doctor about the meds and they are just thinking that my physical pain is effecting all my mental problems. Which has always been somewhat of a problem so its probably not the meds. Alwayz I'll probably be sending you an email later today I have a few tests today and I'm exhusted still haven't slept I've been up for close to 25 hours now.
But regarding the strep that I had, apparently I have the strep virus on my skin now (this is the 3rd time I've had it this way) which causes a bunch a red itchy blisters all over my body. Which is just amazinnggg(sarcasm) because I'm sensitive to anything mostly over my whole body. So I'm going back in strep meds and going into a more sanitary room again. Basically my visitors can't come into the room again. Not the ICU again luckily but still a horriblely lonely room again. Ugh. This is so frustrating. They can't seem to figure out why my immune system is so bad. They ended up having to do blood work which was painful to find out what's going on with my immune system. I can't think of any reason it would be plumiting the way it is. Neither can the doctors apparently.
Well. That's the end of this horribly long message haha.
Thanks again everyone.

Dec 02, 2015 9:14 AM

I'm sorry you didn't get any sleep last night Jenna. I'm glad I could be there for you last night. You text me anytime you need or want to. I know it's hard to deal with the strep on your skin. I would imagine at this point they are worried about hospital acquired infections and that is why they are putting you in a more sterile environment. I know it sucks but at this point it may be better for you physically. Hang in there. When they take you for tests, make sure they give you a mask, so you aren't breathing all the germs in the hospital.

Dec 02, 2015 9:18 AM

I'm glad to hear from you Jenna. And happy to know that cearea was able to talk to you during all of this. I was very concerned as I'm sure all of us were. I am praying for you dear

Dec 02, 2015 9:52 AM

Jenna, it stands to reason that your immune system is more compromised with all that is happening to your body. Each new thing that attacks you and your immune system isn't strong enough, it doesn't have what it takes to fight everything off that's going on. You get weak and exhausted. I don't know why these doctors can't explain that to you. That's what the infectious disease doctors and pain doctors and my neurologist explained to me when I was in the hospital. I hope you find some comfort somehow so your body and spirit can rest. Sending gentle {{Hugs}} and daily prayers that you remain as strong and in as good spirits as you can. The gang's all here, Baby!! We've all got your back.💕🙏🏻🌻

Dec 02, 2015 10:32 AM

Cearea I've been wearing a mask basically 24/7 since I left the ICU. Alwayz thank you for explaining that to me. They might have said it but with all these pain killers my brain might have just dismissed remembering it since they most likely used big words haha. But I just got back from an MRI, which was horribly painful because I had to move and be touched. But if it helps finding out what's wrong I guess its worth it.

Dec 02, 2015 11:30 AM

Jenna, I am sorry that you have been going through so much physically and mentally. Usually the two go hand and hand don't they? But with all you said, you have gone through a lot. I would be a wreck if it were me. So I think you are holding up better than I would. 😀 Make sure they sterilize that phone so that you can can take it with you and keep in touch. I am glad they are going to protect your immune system. It sounds like they really need to. Will people be able able to put on gowns and caps, gloves and mask and visit you at all? I hope at least a couple of people can. I don't want you to be completely lonely. I don't want you to be looking nelly at all. I hope you start to make some improvements real soon. Best wishes.

Dec 02, 2015 12:12 PM

My phone got put into a bag so I can use it haha. And only my mom and dad can come in and they have to wear these crazy looking outfits. My mom has been telling me I'm more mentally sane than she would be in the situation I'm in now haha. I'm trying to stay positive but the only thing that's somewhat positive is "I'm still alive" which is a star .

Dec 02, 2015 12:22 PM

I'm sending you positive vibes Jenna!! I hope your body can heal and get back to somewhat normal, or what's normal for us! I'm so glad you have your parents there to support you, I do too and they are the only reason I've been able to stay alive since they are my caregivers. I'm happy you are well enough to still talk to us on here, keep up the positive mindset girl!! You are so strong to be able to go through all this! You inspire me to keep going! Martin Luther King Jr said " If you can't fly, then run, if you can't run, then walk, if you can't walk, then crawl, but whatever you do, you have to keep moving forward." 💪🏼 xx

Dec 02, 2015 12:22 PM

You're still alive, Jenna, because you're strong and young and you have many people supporting you and you have a caring and compassionate heart to help others when you're in the situation that you're in. Prayers from all of us, your sweet spirit and God's good Grace are all going to pull you through this. I wish I was close by that I could meet you at the hospital door when you are discharged to go home and give you a huge (but gentle) hug. Hang in there, you'll start getting stronger. You keep your chin up and know there are a whole lot of people praying and pulling for you!! 💕🙏🏻🌻😊

Dec 02, 2015 4:12 PM

Jenna, I'm sorry I wasn't on earlier. I had two appts today. I hate to hear of the strep on your skin. It sounds like your immune system is literally attacking every aspect of your body. You should take pix of your parents in their outfits... Blackmail later! Lol 😉. You are a very strong young lady. You've gotten this far so don't give up, keep fighting. I'm praying for a turnaround in your health, for the better soon. (((Hugs))) 😒🙏🌼

Dec 02, 2015 6:21 PM

Jenna I have been praying for you. Thank you for checking in. I told a handful of other CRPS folks and they too have been praying. How is your stomach? I think I may have missed a msg here. Did they put u in a coma? My email is the5corders@cox.net feel free to email me for cell phone. I am in AZ so I may be up later than some. I do not even know u but u have impacted me. You are so courageous. You give others hope. Gentle hugs

Dec 02, 2015 6:39 PM

Jenna, I don't know what happened last night with the messenger; I received a message that there was a new version which I downloaded. If you would ever like to email me, feel free, Annesgtphotos@gmail.com.

Dec 02, 2015 7:11 PM

Crps, I was sent into the ICU I have all the info in the topic when I first came back online it should be some where in the recent ones as its still getting commented on lol. But basically I got strep and it basically almost killed me.

Dec 02, 2015 7:38 PM

That was what was in your stomach not Crps? I will keep looking - if you get board email me it ;) hugs

Dec 02, 2015 7:45 PM

No I do have CRPS in my stomach. I just caught strep and any time I get it my entire throat closes up so tight I can breathe and a bunch of other crazy things.

Dec 02, 2015 7:47 PM

And CRPS the topic that it's under is
hello my wonderful pain family
It's soooo much to type out haha

Dec 02, 2015 7:53 PM

Found it! How does it feel in your stomach w Crps or is it just not working right? A friend at my local rsd group has it in her lungs. No pain but most times she can't talk. Step on top of my Crps is torturous I can not imagine yours. You are so courageous and truly inspiring to me.

Dec 02, 2015 7:56 PM

Well my stomach actually swells so you can see that my stomach is bulging at times. It also feels like it burning and stabbing just like any other place CRPS is at. But I can't eat at all. So I have a feeding tube going straight to my stomach. Sometimes it will stay in my stomach other times it will come up because my stomach just can't handle it.
My doctors are actually worried it will spread to other organs soon because how fast my CRPS usually spreads, it always has been super fast. When I first got it it started in my big toe and with in 2 weeks it was all the way past NY knee

Dec 02, 2015 7:58 PM

Jenna, I know you must be lonely but from what I've read there are some truly caring people pulling for you. Praying for your healing and well-being. Also sending a hug!

Dec 02, 2015 8:00 PM

Thank you so much jshaff, and yes so many people here are so caring and it is really keeping me going and staying positive.

Dec 02, 2015 8:03 PM

Msg me anytime you need to talk. I'm usually up as I don't sleep much. I don't know a lot about CRPS but did look it up so I could understand if you need a friend again. Sorry I didn't see the post when you first did it....still getting used to the app

Dec 02, 2015 8:04 PM

How old were you when it started? I can't imagine my kids getting it. Praying the tube stays and you get to leave the hospital w min pain soon!!

Dec 02, 2015 8:05 PM

Thank you. And there's not even much info online about CRPS, I had to learn about it from multipul doctors especially when I first got this 7 Yeats ago. It isn't known as much as it should be. And its okay :p it took me awhile to figure out the app too haha

Dec 02, 2015 8:06 PM

I'm going to email you CRPS so we can talk about it. I like talking to people with the same condition

Dec 02, 2015 8:48 PM

Good luck and continued prayers

Dec 02, 2015 11:51 PM

I have been there. In fact, I went through it tonight. I cried and screamed and cursed at the top of my lungs. The best trick I have to calm down is notice things around you that make you happy or calm. For me, that's my chinchilla, my sketch books, my collection of Disney and Tim Burton movies (I know, I know.. but I love them so much), my stuffed bear my boyfriend bought me for valentine's day, and pictures of my boyfriend and I and my friends.
Noticing the physical things really helps ease my mind, keeps me grounded. Life is incredibly overwhelming at times, especially for people like us who deal with medical issues on top of it all. Anxiety is the scariest thing and I know exactly how you feel. I give myself such terrible anxiety ever since I started getting very sick to the point I vomit and shake almost seizure-like. You can also lay on your back and take deal breathes and hold onto something special to you whether that be someone's hand or a stuffed animal or even just a pillow that is soft and welcoming. Find what works best for you. It may be trial and error for a few times, but finding your grounding method can do wonders to relax you faster and help you cope with them better. Much love being sent your way.

Dec 03, 2015 2:53 AM

Jenna, I also have CRPS/RSD, it is a hideous disease and anyone who thinks it isn't is crazy. I have it over most of my body and it keeps spreading to areas that I've had surgery. I've had 29 surgeries in the last 22 years. It's rough and along with all the other crap I have it makes it harder. I understand how you feel and I am so sorry every time I think of someone your age suffering so. I don't want anyone to suffer, that's for sure, but it really breaks my heart to hear of such young folks being in agony. I'm here whenever you need me and now that you have my info, we can chat. {{Hugs}}💕🙏🏻🌻

Dec 03, 2015 6:44 AM

Jenna, and everyone, I am a newbie here, but not with CRPS. I have it in both legs basically from the knees down, and have had it since 1992. I have been where you are Jenna, many times in the first few years. Finally a physiatrist in Toronto (300 miles from here) told me to try a trick when the panics start. Concentrate really hard and relax your scalp muscles - it is hard to do because your pain won't let you but try very hard. Then try your forehead, then your face, finally your chin and jaw. Once you get used to doing it, it is amazing how well it can work.

Another trick to bring your pain down is to listen to funny stuff, comedians, funny songs, anything that will make you smile. It WILL lower your pain and make you feel a little better.

Have a wonderful day, everyone! I will be lurking around for a while so I can see what your custom is.

Dec 03, 2015 6:46 AM

BTW, I am male. I can't get the app on my iPad to believe me, but...

Dec 03, 2015 7:58 AM

LOL!!! Welcome to our community family Geekausaurus48. Sorry to hear that you have the dreaded CRPS/RSD. It is a nightmare to say the least. It can spread at will or spread to an injury site or surgical site. There is no rhyme or reason. I'm glad that you found us and I think you will come to learn that this is a wonderful, zany, loving, compassionate, understanding and supportive group. There are no judgements here. We help each other through tough times and celebrate each other's achievements. We are all here with different diagnosis but we share the commonality of chronic, irretractable pain. I have been formally diagnosed with a laundry list of pain causing diseases and syndromes. (All of which are effected by the weather, stress, overdoing physical chores, etc). I have Fibro, DDD/DJD, Scoliosis, Lordosis, Costochondritis, TMJ, long thoracic nerve palsy, sciatica, SI Joint disfunction with fractures, cervical spondalytic myelopathy, hypothyroidism, GERD, anxiety, depression and several other things. I hope that you do settle in here and find support, information and friendship. We are here for you no matter the time of day or night and if you need a hand, there will always be one to hold. It's good to meet you and welcome again. You'll be in my prayers.🌻🙏🏻

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