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Tired of this

Aug 23, 2015 7:59 PM

Spent the weekend With family at cottage in Harrison. Pain has been horrible. I was up 3 times last night, waking with it and finally woke at 7am, and couldn't go back to sleep. This pain is out of control and I feel hopeless. Couldn't go on the boat or anything. Ended up leaving everyone, during the afternoon as I had to lay down. I don't know myself. Tried meditation, but did not help the pain. I am not scheduled tho see my gastroenterologist until the end of October!

Aug 24, 2015 7:18 AM

Chocolat, I'm so sorry your pain is out of control! It's very likely you felt stress from not being able to participate, and that would increase your pain also. I certainly hope they understood your news to rest. Would they delay the boat ride and play a game until you read, so you can go next time?

I totally understand the sleep issues because I suffer that way too. If I'm not waking from pain I'm waking to go potty (IC & OAB), or take meds with 6-8 oz water, then back to the port an hour later. It never fails I wake 3-5 times a night. Anyone that does similar cannot get refreshing sleep.

I had to wait months to be seen at Mayo in July, and it was stressful. Now I'm waiting to return for tests in September. Unlike the first visit, I'm trying not to think about it as often as last time, and its helping me not to stress out. You will be in my thoughts and prayers, and I'm hoping this doctor will be able to bring you more relief. 🙏🌼

Aug 24, 2015 7:33 AM

Hi Chocolat. . I'm sorry you are hurting so much and that it ruined your family weekend. Flappys so right..when we can't do the things we want to do because of our pain it is really heartbreaking and stressful and that takes an additional toll on us.

I hope you can get some rest and feel better soon!

Aug 24, 2015 7:55 AM

Chocolat, I feel your pain. I get stressed about being around a lot of people and even when we have a BBQ in my own backyard, I can't always stay and hang out with everyone because I need to go rest and be alone in my room to decompress. The problem is that it gives me more stress and guilt because I feel like I should be there. I was always the person who went everywhere and was the first to arrive and the last to leave and now I go practically nowhere. It's lonely, depressing and I just wish I could have my old self back. Over the last 22 years I've learned that I have to do what I can when I can and not feel badly when I can't, just to take the rest my body is telling me I need. I don't sleep well either despite taking sleeping pills. Sometimes I fall asleep early and wake around 1 or 2 and I'm up for the night and exhausted all day. Other times I am awake until 5 or 6am and then fall asleep for 2 hours and then I'm up and exhausted the entire day as well. After a while it all catches up to me and I fall asleep and get about 5 hours and I'm grateful for that much. Sometimes I'll even doze back off and get another hour or so. Those days are few and far between. I hope you are able to get some much needed rest. Is there a certain kind of music that makes you calm and relaxed that you can kind of get lost in?? Sometimes that helps me. I'm still learning how to meditate and it doesn't come easy to me. You're in my thoughts and prayers. 💕🙏🏻🌻

Aug 24, 2015 11:51 AM

Thanks everyone for the suggestions. I will try some music therapy. Last night was worst then the few nights before and now doing my 12 hour shift at the hosp. Dragging.

Aug 24, 2015 12:13 PM

Chocolat -wow.. I don't know how you do it with shifts that long. I can barely get through my 7.5 hr work day most days. :(

Aug 24, 2015 8:01 PM

I HAVE to work, so no choice. :-[

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