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leaann
07-13-2009, 07:15 AM
Hello,

I am not sure how to ask a ??? or even bring up the topic. But first I would like to say I find this place very informational to me, and everyone seems to talk so open about everything which I find is really great.

I have a very big problem and have talked to my husband about it (on a small level) don't know how to talk to him on a bigger level about my issue.

I don't know if others have experienced any of my issues in regards to yes I guess I am going to have to say it (sex).:shocked:

Here's the problem and I think my husband knows it is becoming a problem, it's not that I don't want it, it is that I am getting physically unable right now to do so.

My joint pain is very bad. I am swelled up most of the time and I am very tired because of it. If I do have sex it takes alot out of me, I will be down for about 2 days. Almost if it makes it worse.

I have never had any problems talking with my husband in the past but when we start to talk about this I get upset and start crying cause I don't think he will understand. I often feel like he gets tired of hearing of another problem I am having. He has taken on the world for me and I don't want to add to anything...

I was reading somewhere on the internet yesterday about some people taking medication right before sex to help with joint issues and swelling.
Does anyone know about this???

I also have tried to do other things before hand to help releave the pain (not much luck there) did find that drinking an energy drink before hand gave me more energy but that doesn't help the swelling and the joint pain...

any suggestions would help if you don't mind the topic!!!!:embarrassed:

gina
07-13-2009, 10:06 AM
i'm not sure how to help. yes i had the same problems .
i do know that the best time for me was in the morning before getting out of bed, i wasn't as tired or hurting. than i would right away take pain meds.

sounds like you should do energy drink also in morning.

if your husband really loves you he will understand. and the way you talk he is understanding and loveing man. so just sit him down and tell him the truth.

my didn't understand the illness at all so we ended up parting. i think if he could get it we might of had a chance and don't get me wrong there were other issues. we were married for 20years.

sorry not much help. but there might be someone along with better advice

Angel Oliver
07-13-2009, 10:46 AM
Well i find having a boyfriend many miles away is FAB :) Even though i love him,im sooooooooooooooo tired lol n hurt.

Joking aside,i think your husband sounds like a nice man and i bet if you tell him,im sure he'll help you with this. Others will post here with some fab responses and not....getting a man who lives miles away,sorry for joking about it as i KNOW its not funny at all. I told my boyfriend as he..well....thinks he's on heat 24/7 but me....id rather sleep at the moment.If anything touched even my legs at the moment id scream.So never mind the other.But you know,he was so caring about the matter and totally understood.

Just hang in there.Watch as many people post better advice for you,to help you approach the subject with your husband.

lots of love
Amanda....too tired.xxxx

magistramarla
07-13-2009, 10:51 AM
Leann,
Yes, the fatigue has slowed me down, too. I also have Sjrogren's syndrome, which causes extremely dry eyes and dryness in other places, too. KY jelly has become my BFF!
There are many nights now that all I want is a quick kiss and hug, and then fall asleep as soon as my head hits the pillow. This is very different from the way I've always been (there's a reason we have 5 children!).
Luckily, my hubby is very understanding about it. I try hard to feel rested enough to initiate things at least a couple of times a week. Also, there are some positions that are impossible for me now, since my knees hurt so much. We've had to get creative with those positions that I can use.
As Gina said, be up-front with your sweetie and have a long talk with him. If you are both willing to work it out, it can bring you closer. I know that my sweetie is being wonderful about it, and is taking good care of me.
Marla

leaann
07-13-2009, 10:55 AM
thanks Gina,

I know my husband will understand, he has had to deal with much worse than this. It is very upsetting to me and I guess I don't want to admit I have these problems that have turned this bad.

I think some of my problem is that it is harder for me to deal with than it will be for him. Right now there's alot of stress in our lives with his brother (known Drug Addict) and My daughter who just left her husband after only 11 months of marrage for a women.

I will stick with trying the engery drinks as long as it helps. Monster mean bean the best :biggrin: so far thats the only brand I can drink right now.

Thanks aways

leaann
07-13-2009, 11:06 AM
Amanda,

Don't worrie about the joking I can always use a laugh.
I can see how a long distance relationship could work with something like this. I have been with my husband for 15 years. We have been the type that we at it like cats and dogs till the last few months. I am talking 3 to 4 times a week, and I stood by him when he had issues with some high blood pressure medication he was taking causing him a problem.

thanks at least you gave me a laugh, I needed that I have been fighting with my printer for the last 40 minutes trying to get the thing to work. paper jam and hands don't work well so I made a mess and now I have black ink all over me.
:wacko:

Angel Oliver
07-13-2009, 11:24 AM
Im glad i didnt offend i realised as i was writing it.Its a subject we all have difficulties with,but it will get sorted.Thanks for letting us know and others will post here too with more advice.Now you go n wash off that ink.My ink stays on my hands for a week,so strong...hope yours comes off lol.xxxxxxxxxxxxx

Danica01
07-13-2009, 10:32 PM
I am so happy you felt comfortable enough to bring this up. It is such a private subject and I think that pushes people away from talking about it. I have to be honest, this is one problem I do not have and I think it has to do with what I do in order to get ready. Like Marla, KY Jelly is our best friend and we use it EVERY time! If we don't it will hurt me AND it will hurt him. I will also take a warm bath. This allows my joints to soak in the warm water and this helps with mobility and the pain. I also initiate it after I have taken my medicine for the night. I take Ultram every night and so after an hour or so my pain level decreases and I am able to "get in the mood". After we are finished I always relax and if it is night time I will put myself to bed. There are times I am sore the next day. I really try hard to initiate this because I want to feel like there is something normal in my life.Tim is amazing and will talk about this with me. There have been times that I have broken down and cried just like you due to the stress of wanting to have sex but physically not being able to. The open communication not only helps with this issue but it allows us to open up about other issues too. I know your husband will listen and he will hold your hand the entire time you are talking to him. Just give him chance and please don't hold it in. If you hold it in you will continue to worry and it will make you feel worse. Just talk to him love. Another thing to remember is being "intimate" does not always have to be sex (I am blushing as I write this and hoping I don't offend anyone), it can be just "playing" around. This will allow you to share some intimacy without all of the movement and you won't feel as bad. I remember when I was suffering from migraines I was told to have sex and that the endorphins released during sex would actually help the migraine pain. This actually worked for me and there are times I feel better afterward when it comes to my Lupus pain too. I always tell Tim it is like medicine.....hehehehehehehehe! He always smiles at that :-) Here is a website that might help answer even more questions you may have:

http://www.health.com/health/condition-article/0,,20188463,00.html

Hang in there and this can be a problem for all of us so don't EVER feel bad for talking to us about it :cute:

leaann
07-14-2009, 07:03 AM
Danica01,

Thanks so much the link was very helpfull. I think this is just a subject that most people shy away from. I am not shy to the subject, it is just upsetting to me and If I know my husband the way I do, he would be more upset than I would about this - his thinking wishing he could make it go away for me,wishing there was more he could do. He realizes I have a problem,we discused that. We have started using the KY that seems to help.

One problem I noticed was last night when we went to bed for the night, If I am hurting really bad he has to put something like icyhot on me to try and help. The vicoden(sp) the doctor gave don't work. Then as he stated last night I smell like medicne all the time, (real sexy) not. I can't smell anymore so I don't notice it. It was one of those moments when he put his foot in his mouth :footinmouth: He then realized what he said but by then I was crying about it. He said he was sorry and I know he was, but I wanted to pop him in the mouth.

I am sure it will all work out, it is just very stressfull with everything else that is going on right now.

everyone has offered good advice and will take alot of it into consideration.
Thanks so much

I just want to be pain free but I know that want happen :hissyfit::hissyfit::hissyfit:

crmj1183
07-14-2009, 10:04 AM
Leann,


I know exactly how you feel, Im sure your husband understands. Things will get better and you wont always feel like this its temporary. Like other things with lupus this too will pass.

Chriss

mountaindreamer
07-14-2009, 04:21 PM
hi lea,

i also have problems with pain during and after sex. Like Marla and Danica said, ky jelly, warm bath, and PAIN MEDS are what helps me relax and enjoy special times. I have also had to severly limit positions. I also agree that you should be up front and honest with your husband....he is your partner in this and i know he will stand beside you.

Danica01
07-15-2009, 07:48 PM
Just remember, it is hard for everyone involved and you both want it to go away........hey, last time I checked the medicine smell was in!!!!!!!! Hehehehehehe!!!!!! Hang in there and remember we are here for you in regards to EVERYTHING!!!!!! I am thinking about you :hug:

Oluwa
07-16-2009, 07:13 AM
Astroglide. A little dab will do ya.

I have Sjogrens too...drying from the inside out, like as if I was microwaved.

Love,
Oluwa

leaann
07-17-2009, 06:38 AM
Ok here goes, we had the talk which turned into the talk, the fight, the talk and the fight and so on and started from 8 pm and ended at 3 am. Do I think it helped, if you had ask me that when we started the talk I would have said no, once it was over I think he understood more. Not saying that it solved the problem just that I think we will have a lot of work to do it. Not easy, and not an easy subject to someone who does not understand,the painfullness of this.

I am keeping my fingers crossed, but still a little aggervated over the talk As he says I am worrieing (sp) to much and making to much out of it. BUt how do you not make to much out of it when you can't acheive what you want 90% of the time because it is painfull and draining.

magistramarla
07-17-2009, 02:08 PM
Leann,
I'm so sorry that the talk became a fight for you two. I hope that he comes to understand that love, and yes, sex, goes in cycles. Sometimes one partner needs special care and sometimes the other one does. It's just part of life to learn to "roll with the punches".
We've been through this ebb and flow for 33 years, so maybe that is why Jeff is so understanding with me. He has had to deal with all of my mood swings as I went through 5 pregnancies and nursing all 5 babies. When he had back surgery, I had to be gentle with him.
Jeff has a great saying that he says has helped him through the rough spots, and he's told it to our kids and their spouses. He says "This too will pass".
I think that this is very wise. Whatever problem is going on, if you just realize that it will pass and be over soon, it does help you to get through the problem. We've always both taken the long view. We both signed on for the long term, and we meant it.
I hope this helps.
Marla

Danica01
07-19-2009, 07:50 AM
I am sorry this turned into a fight that lasted for a little too long! The good thing is that it opened up the lines of communication. It is a tough topic to talk about and sometimes it is hard for our partners to talk about something so personal to each of us. I am just so proud of you for even trying and it will get easier. There are ups and downs in every relationship and this will turn up, I promise. Magistramarla is right and she has some great advice because she has been through this a few times with her love. I have even noticed with Tim and I that sometimes I initiate it more and sometimes he does......it is like waves and you just ride them as they come and go. I really think you have taken the right step in the right direction. I am proud of you!!!!!!!!!!!!!!!!!!! I will be thinking about you today and hoping that everything at home is going well. I am sending you lots of hugs :hug: