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any advice?

Oct 17, 2015 11:34 PM

I have had CRPS for 7 years and I have had it manageable for the past few years up until this year. I've been living with my boyfriend throughout this last flare up. Which has been the worst of all of them (my entire body now has CRPS ) I love him a lot but since my CRPS has reached my entire body I haven't been as interested in sex because it hurts. He has become so distant to me. Hardly talks to me, and is always trying to get me to do things and complaining about how he is "frustrated" he no longer even cuddles me at night because of it. I am suppose to be getting those back shots soon(sorry don't know the actual name of it) and he knows that but daily he is always saying "well once you get those shots things will be back to normal again" he underestimates my pain. I understand that he is doing a lot for me. But he thinks his "frustration" is more important than my pain. The worst part is I know even once I get the shots that my "normal" pain level will no longer be as low as it used to be. So that means I still will need time to adjust.
I'm only 18 and I am just so deppresed because of this. I just don't know what to do honestly.
If anyone has any advice I would appreciate it.

Oct 18, 2015 12:01 AM

Jenna I am so sorry that you are having to go through all of this at your age. I hate to see any young person have to live in so much pain. Have you talked to your boyfriend to try and explain what is going on in your body. That you want the closeness back,but it may not let you have sex without being in terrible pain. Also have him go to your Dr's appointment with you and tell him to help you with any questions y'all may have. Ask him to lay down with you and watch TV or movies, or just talk tell him that you miss your lives together, and that you realize that this is not the life that y'all had planned together. Will be praying for you, sending hugs your way.

Oct 18, 2015 12:05 AM

I've talked to him about it so.many times :(,telling him over and over again. But all he does now is sit and play Xbox. And I wish I could.convince him to go to the doctors with me :/ thanks for the prayers and hugs <3
Luckily it's not so much the pain that's making me depressed mostly. It mostly the young love thing haha

(I always try to make short replies but I love to talk and I ramble so much sorry :p)

Oct 18, 2015 12:23 AM

Men have one track minds, I know from my husband that he pulled away when it got too painful to touch me anywhere much less sex. For some reason if it isn't going to lead to sex then why bother with cuddling, spooning,a massage, just holding hands and maybe some kissing.While watching a movie or TV show. Tell him that you miss sex as much as he does, and if your hands and fingers are pain free y'all can do some heavy petting. Tell him that if he would go with you to your Dr's appointment y'all could talk to him/her about the problem together. To any guys out there sorry for the male bashing.

Oct 18, 2015 12:44 AM

Thanks so Mich for the advice :)

Oct 18, 2015 4:08 AM

I am 38 yrs old and have had the same issues with my husband (we have been together 20 yrs) and it will eventually get better or worse. I know it's hard and very painful for you but we have to atleast try. My husband finally understands but it took years of crying, fighting, and everything u can think of. My advise to you is sit down and tell him how much you really want to get intimate but ur scared of the pain. If he understands he will take it slow and appropriate the honesty. Good luck to you honey, god I've been in ur shoes a million times.

Oct 18, 2015 4:44 AM

Thank you so much noodles :) I plan on talking to him tomorrow :)

Oct 18, 2015 10:36 AM

Jenna, I am so sorry that at the age of 18 you are in such a state with your health. I understand the impact it has on others as well as the suffering it causes you. As far as your boyfriend goes, he sounds like he is being selfish, getting his back in the air because you are in too much pain for sex!! I haven't had sex in longer than you've been alive because of pain. He will learn there are more important things in life than sex and I k ow that I have to chalk part of that up to him being young. I'm sure he does do a lot for you. I would have him come along with you to your doctor appointment and have the doctor explain exactly what it means to have CRPS and how it translates into horrible pain that is difficult at best to control. I would sit down and have a heart to heart with him and let him know that distancing himself from you is hurtful. Also that cuddling in bed is fine and that it needs to be gentle and without the expectation that it is going to lead to anything other than cuddling and falling asleep in one another's arms. He also has to know (if it had to come from the doctor) that the shots may not bring things back to the "normal" that HE wants it to be. He has to learn that he has to adjust to the new normal and so do you. There may be some very good days where you will feel well enough to have sex or enjoy time doing something together without feeling so horrible afterwards. Hang in there and know that if you need to chat, we're all merely a keystroke away. I wish you the best of luck and am sending you gentle {{{{Hugs}}}} and prayers that things get back to some sort of normal for you and that your pain is more easily managed.πŸŒ»πŸ™πŸ»

Oct 18, 2015 11:04 AM

I agree, get him to go to dr, ask the dr to talk to him and consider explaining to the dr that he doesn't understand and is taking it personally, most docs would help and inform him. Frankly, if he can't hack it better you know now than when u guys are married or worse married with kids. If he doesn't shape up and support you after you're sure he totally understands what's up, then ditch the zero and get yourself a hero. Lol couldn't help it, the fogeys will get that reference. A good man will work through this if he loves you. However, if he loves your bits but not your wits, you're better off without him. It's a hard road but hard as it is, it weeds out the shallow and insincere. That can be a blessing in disguise. Just don't settle sweetheart, you're way too young and trust me, no guy is worth a life of feeling lonely. A good guy will be with you to have your company, sex is just a bonus. Maybe ask how he would feel if due to health issues he was impotent. How would he want to be treated? How would you react! It's very much the same, you can't enjoy it so shouldn't do it, it's supposed to be a pleasurable act, a loving exchange, and can't be if you're miserable. Plan B is give in on a not so bad day, be the worst dead fish possible (don't move, don't give any sign of enjoyment etc.) and make it clear before and later how passionate you are about him when you're up to it but that it's miserable otherwise. Most guys will get it at this point if nothing else works. If he's ok with dead fish love, he's one messed up dude, RUN! Actually you'd hope he'd stop after seeing you're not into it. Good guys are turned on by you liking it, not just by they feel good. I'd also ask if he really wants to if you're hurting and can't enjoy it. Also would work to get better pain management, try counseling even if by yourself to do what you can to cope, and know you can survive or you can thrive, attitude makes all the difference. Good luck! Hugs, and my prayers are with you.

Oct 18, 2015 2:42 PM

I've been laying in bed for hours crying In Pain. He hasn't said a single word to me....

Oct 18, 2015 3:54 PM

My pain is so horrible at this point that I've Been crying for hours. I feel like he doesn't even care though. I just don't know what to do. I tried talking to him. And he just didn't seem to understand.

Oct 18, 2015 7:30 PM


Please take my words as kindly as I am trying to give them as I do not desire to mess up your happiness. But from what I am hearing and imagining, you are not happy.. I am going to give you some things to weigh in your mind. First of all, I know you feel you are in love being so young. I hope you are. When I am in pain, my wife looks for ways to comfort me. Ask yourself, is this young man mature enough to give you the emotional support you not only want but truly need. Does he offer acts of compassion, try to reduce your pain by massage or by other things that may help. You said he doesn't even snuggle with you at times when you want.

You have to remember that he may be one of the greatest guys out there. But if you are 18, I am guessing he is around there. Men are not very mature forrelationships even at that age. They have a lot of growing up to do. We hate to admit that girls mature faster but it is the truth. Facts are facts. But men get better with age. I felt I became a better, thoughtful husband around 27 when I realized that the world did involve other people. Up til then, it was like they were characters in my book. Then I realized everyone had a book with their own story. If I wanted to get to know them on the surface, I needed to read the info page. Ha ha.

I just think you should ask yourself, should you invest in a relationship that may not be giving you what you need, that appears to be a little more focused on his sexual needs over your pain. At least that is the way it sounded. It could have just been momentary. Do you think he is there or can soon be there for you emotionally? Because the way you described your pain, you should have a good support group. You shouldn't have to hide your feelings or your pain. If you are sad because it is too much one day, we should be able to tell the one we love and expect them to hold us a little. They should let us cry on their shoulders.

I think that is all I am trying to say. I am not trying to get you to break up with your boyfriend. I was just trying to get you to consider that if you are having a hard time now with these symptoms at this age, maybe you consider a better investment. Some who will make you feel like they are truly there for you. And when you can't have sex, you are not letting them down.

Chronic pain is hard on young couples. It can tear the best of marriages apart. It is usually the communication breakdown.

Contrary to what I have written, my hope is that your boyfriend is not what I had imagined by some of your words. I hope you have the love support and communication.. I only want what's best for you and your condition

Oct 18, 2015 8:01 PM

Thank you so much profiler.

Oct 18, 2015 10:50 PM

I have a feeling I am going to be moving in with my mom until I get this under control....

Oct 19, 2015 9:05 AM

Jenna, you have to do what is best for YOU. Just remember that you have an entire family of genuinely caring and understanding people here. We are here for you no matter what. Sending positive vibes, {{{Hugs}}} and prayers your way. Hang in there, you've got a lot of people pulling for you. πŸ’•πŸ™πŸ»πŸŒ»

Oct 19, 2015 9:46 AM

Jenna, sweetheart. I feel your pain. Your heart pain. I don't know what your body pain feels like. But my other half had been dating the same thing, who when you get better bla bla la bla bla. Uh, honey, these are incurable illnesses all they can do are treatments. And his response, well when they find something that works we can do this this this. Yet we are both home bodies.

Before he realized how deeply my pain went and my chemical sensitivity was, he was all cuddles and sweetness. Then when he realized that the treatments arw only temporary band aids that don't even quench the bleeding wounds that's when he stopped cuddling, started picking on me for what i couldn't help (one time (and this is PRICELESS!) HE TELLS me that i couldn't remember the conversation we had because of all the medication i am on. When just the day before I had to make sure my mother could bring me to surgery because he FORGOT AN ENTIRE CONVERSATION that he and I had about bringing me to surgery).

Your story especially jumped out at me because of the xbox. My other half plays xbox all day long when he's not working. He hasn't got time to hang out with me except when his boys aren't on (and is all, ALL about his schedule). And then it's usually the time when I'm going to bed so he gets mad at me and throws in my fave that if i weren't sick all the time we could hang out. Ha. Ha ha ha ha ha!

Trust me, sweetheart, it's only going to escalate. If he can't stand up and take it like a man, he's not worth your time or your tears and I've been crying a lot of years lately because I am in that similar situation except this one played at being a man for a while when we first got together. And then all of a sudden my illness and everything that comes along with it is all my responsibility and he shouldn't have to do anything for it. So i said, have fun feeding yourself and keeping the house clean because I'm not your maid. Ugh. Sorry. Didn't mean to go on a rant.

I just identified with your story so much. Tell your mom hello and let her know what's going on. He's either going to see how much he loves you or he's not. But it sounds like to me he's not really in the game. I'm sorry you're going through this, I know how difficult it is.

Please let us know how everything goes. And please let us know if you're able to go back with your momma. I'm going to worry about you until i hear back from you. Lol. Honestly then i won't have to worry about myself for a little while.

Thinking and praying for you.
Sending you lots of positive energy and strength. πŸ’•πŸ’•πŸ’•πŸ’œπŸ’œπŸ’•πŸ’•πŸ’•

Oct 19, 2015 12:36 PM

I've been reading your thread too kitty. And I thanks so much for great advice. Its nice having someong understand. Im calling my mother later today. And I'll be updating soon :)
I also had to change my freaking password on my phone because he doesn't even trust me now for some reason. He goes onto every app that I have and reads everything. I even had to put a lock on my journel on my phone I feel like I'm not getting any privacy

Oct 19, 2015 2:00 PM

I am so sorry, Jenna! I knew it was over when i started being suspicious of his activity. When he started being super secretive about everything.
And ooooh boy when I pulled out our old joke about his other girlfriend, he got so defensive and angry and scowled at me as if I had just told him that I was really a man. (he's totally not understanding of people who are different in any way and it makes me crazy. Like how did ever fall for this guy?? And i wasn't blinded like i was with others. It was him. The other side of him.

Jenna, let's keep in touch. Message me kungfukittay@gmail.com

Jenna, we have to remember to take care of ourselves before others. Did you see the part about how my momma told me i can't come back home? I am thinking my dad thinks that is all just going ti work itself out. That I'm being crazy. Ha ha ha ha. I'm not the crazy one this time.

{And you spammers didn't see my email address correctly Bwahahaa)

Oct 19, 2015 5:42 PM

I sent you an email :) hopefully talk to you soon :)

Oct 19, 2015 5:55 PM

Hi, I have found in the twenty two years of fm/cfs that people don't understand pain unless it happens to them, you are young and I am assuming he is young. He has not a clue what you deal with. This might seam cruel but when a boyfriend asked what it felt like I put clothes pins on him at all the fm spots on my body. And them had him act like he had a fever. I did this for an hour and was exhausted. He became my most adamant advocate about the diseases. I don't know what you have or begin how to simulate it in others but it worked for me. Or I just let then go as it was to uncomfortable dealing with there issues and mine as well. There is hope sweat heart love, moshell

Oct 19, 2015 6:02 PM

I have CRPS and there is a way to stimulate the feeling by putting a body part in very cold ice water for 60 seconds. Then take it out. I've mentioned it to him and he said "hell no I'm not doing that"

Oct 19, 2015 6:06 PM

Guess he is not willing to understand what it is you are going through. That's ok though we did not pick these dieases. They just showed up. We probably wouldn't do it either if we felt good.

Oct 19, 2015 9:42 PM

Jenna. Sounds exactly like what my other half would say. Wood for word!!! Oh my goodness. I'm going to check my email, Jenna!

@Moshell, that is an awesome awesome way to explain it. If i ever get back out there again that's exactly how it will be explained. Because for some reason what I've been doing hadn't been working. If course things don't work when you're trying to use a frying pan to make soup. (running low on metaphors, and my neighbors are sleeping so it isn't as if i could ask them for a cup of brains to help conjure up metaphors.... Umm okay one been watching iZombie on Netflix which is hilariously dry, witty fun humor. And smart too, so this could be where the reference to brains came in. ....) lol okay

Sleepless Kat over and out lol

Oct 20, 2015 9:06 PM

JennaReimer, I'm just way behind on reading everyone's posts. I'm sorry you're going through this. There's nothing so painful as giving your heart away and have someone treat you as if all you are is what you can do for them. He's immature for one thing. Relationships are not just about sex. Intimacy is more than just sex. It's about being able to communicate, and working together to resolve differences in a way that is good for both. It's about doing whatever you can fit the other one, so that they know you love them and want to help make their life as special as possible. It's about accepting the gold, the bad, and the ugly.. It's about commitment, 100% from both. To me it sounds like you are committed but he's not. I can't add any advice others haven't given already. But the right one for you will not be hurtful and will be willing to talk with your doctor. And he will be all in committed. You're in my prayers! (((Hugs))) πŸ™πŸŒΌ

Oct 31, 2015 2:53 PM

Flappys, thank you for worrying these words. I'm needed to read those words again to make sure that I'm not being selfish or overreacting to being with a man who is withholding all affection and is so angry all he can do is tell at me for not being perfect because I asked him to get me a couple things while he was in town. Yes, I'm still here despite promising that I was leaving. I was trying to avoid two things, moving so close to after my surgery and two having to move more than once in a short time period and most importantly having 3 cats who do not get along in one room at my parents house.

It was not because i had many illusions that it would get better, although that was a hope. It's only gotten worse and it will only get worse. I think some Pele are too chicken do they behave as major as possible to make sure they can come out looking clean and free from the taint of breaking up. They can play the victim.....

Oh a friend asked how do i continue to do this to myself..... Pffst I have no idea but I thought I was near the end!.... Oh well.

Jenna oh Jenna! You deserve so much better! Most men can't stand that they can't fix something. But in this case is he is incapable of making concessions about physical intimacy, he's got problems that will not change with your help. I went through that and looking back, I realize now that I was only an inconvenience for this guy and when I couldn't be with him physically her found ways to make me pay for it. Yet another one who was trying to make me dump him. Hahaha. Omg how many turds do i need to hook on my fishing rod before I get a gem?

Jenna, keep an eye out you'll be getting another email from moi!

Big hugs

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