Love sex! advice sought from 'veterans'. Pain should be of the best sort ;) Bad joints

I don't mind, I was born with dislocated hips and was in a splint the first year so I'm fortunate enough that you wouldn't know without being told but they are still liable to lock or semi-dislocate if that makes sense. I have crohns disease which in my case affects my joints although this does not happen in every case of CD by any means, selection of symtoms vary from person to person; again very fortunate I was diagnosed at about 2 and a half so reached 5ft 7/8 :) 

I'm hypermobile which means that I can impress kids with some tricks  but am not severely so. During a flare up of crohn's I refused to take time of work because on a skeleton staff of 25 3 or 4 were already off, 2 for an extended period so through my own folly damaged my knees. Kept that hidden for about 6 weeks once they became very bad until they would no longer bend at 3x normal size and had to sort of wobble upstairs (which gave me away) and rhuem gave me steroid injections into the knees. Unfortunately though they recovered my shock absorbers had been so abused that they don't work anymore.  I was told not to do any heavy work and given a strict warning about consequences of some things, including ignoring problems :S . Basically have always had joint problems to a greater or lesser extent they just worsen during the winter and are likely to need more care as I age (young though I am!) Because of the combination of things and 'ravages' of life (LOL) I have secondary arthritis which is triggered usually by impact excercise or cold so risk evaluation is required with some things e.g. is doing X going to be worth the consequences. Sometimes the answer is yes, other times you make a different choice; occasionally it's unavoidable like carrying heavy shopping back when there is no money for a taxi and hubby is at work but such is life!

Caring husbands are wonderful things :D Sorry about the spiel, not meant as any kind of pity play or self absorbed piece. I am not at all bitter, I am not resentful, I find better detail constructive most of the time. Life is to be enjoyed and you work with the lot that is given, I have been richly blessed and have developed many talents that had things been different I may never have found or been interested in! Certainly hope I haven't come across in a selfish or embittered way!

Rowan wrote:

I don't mind, I was born with dislocated hips and was in a splint the first year so I'm fortunate enough that you wouldn't know without being told but they are still liable to lock or semi-dislocate if that makes sense. I have crohns disease which in my case affects my joints although this does not happen in every case of CD by any means, selection of symtoms vary from person to person; again very fortunate I was diagnosed at about 2 and a half so reached 5ft 7/8 :) 

I'm hypermobile which means that I can impress kids with some tricks  but am not severely so. During a flare up of crohn's I refused to take time of work because on a skeleton staff of 25 3 or 4 were already off, 2 for an extended period so through my own folly damaged my knees. Kept that hidden for about 6 weeks once they became very bad until they would no longer bend at 3x normal size and had to sort of wobble upstairs (which gave me away) and rhuem gave me steroid injections into the knees. Unfortunately though they recovered my shock absorbers had been so abused that they don't work anymore.  I was told not to do any heavy work and given a strict warning about consequences of some things, including ignoring problems :S . Basically have always had joint problems to a greater or lesser extent they just worsen during the winter and are likely to need more care as I age (young though I am!) Because of the combination of things and 'ravages' of life (LOL) I have secondary arthritis which is triggered usually by impact excercise or cold so risk evaluation is required with some things e.g. is doing X going to be worth the consequences. Sometimes the answer is yes, other times you make a different choice; occasionally it's unavoidable like carrying heavy shopping back when there is no money for a taxi and hubby is at work but such is life!

Caring husbands are wonderful things :D Sorry about the spiel, not meant as any kind of pity play or self absorbed piece. I am not at all bitter, I am not resentful, I find better detail constructive most of the time. Life is to be enjoyed and you work with the lot that is given, I have been richly blessed and have developed many talents that had things been different I may never have found or been interested in! Certainly hope I haven't come across in a selfish or embittered way!

You don't sound bitter at all, very positive in fact which I admire .

Have you heard of Hypermobility Syndrome? That's what I have, it is the same as being hypermobile but having pain with it, a lot of people have dislocations and partial dislocations because of it. And a lot of sufferers do have Crohn's too. Hard to define whether the Crohns causes the hypermobility syndrome or the syndrome causes the Crohns. Anyway, I digress, my point was have you ever stumbled across the hypermobility syndrome association website? The forums on there are useful for tips on general day to day things, also I've heard good things about the Ehlers Danlos syndrome type 3 support forums. Although it seems like you have it sussed so maybe you don't need the tips! The only problem with these sites though are that many people are quite bitter and resentful of their condition and this can be a bit frustrating if you are a positive and upbeat person!

I certainly admire this "risk evaluation is required with some things e.g. is doing X going to be worth the consequences."! I have trouble with pacing myself and need to learn that skill! As for the shopping, considered buying a shopping trolly? I have one, and being young (and a student), most people just assume it's to carry lots of booze back home so it's not too embarrasing either!

You obviously have a lot to deal with, and it must be hard for you, particularly at such a young age, I find my condition difficult so young and I only deal with a tiny percentage of what you seem to so I really admire your positivity  We need more positivity in the world!

Ax

Haha. I love the trolly idea but I live on a hill :/  i don't know how well acquainted you are with the geography of Dundee but we do a good line in hills! I haven't heard of the associations so may scout them out but it's only a few areas I need advice in and this seems to be a source of good advice for one in particular which seems to elicit much humming and hawing in other quarters. I don't usually see it as 'a lot to deal with' most of the time and I think youth gives the advantage on that one, easier to get used to something if you have less to give up and fewer years of forming habits behind you. Always been part of life and you work with it; whether that means that you go through 30 books a week (at 11 I had membership in 3 libraries..ah the days before computers!) because bikes are currently off the agenda, or finding new sexual positions. You learn to take every opportunity.

Everyone has their own struggles. I'm actually not surprised at the disproportionate number you describe with CD as it seems to have 'links' or correlation (note not causation necessarily) with several things, I've been involved with a couple of support groups before like epilepsy action and CICRA and you tend to find a 50/50 split of those embittered and those bloody minded who decide nothing will stop them and learn the hard way to grudgingly compromise without losing the joy in life! Like I said, I've been fortunate, wonderful husband, parents who vetoed some of my madder plans without being over-protective and a good team of Dr's.

Pacing yourself takes time to learn and I'm still not there yet and risk evaluation requires a shift from obstinacy to being constructively stubborn so good luck with that! Anyhoo, I have printed off the advice and shall be experimenting ;) in the next wee while! WIll check the other forums for useful things but mostly I think stick to buttering up the OH to carry LIDL, farmfoods,  ALDI  etc stuff back while Tesco and asda deliver to the door! The life of a skint student :s    Thanks for reassuring me it didn't come across in a way unintended

 I'm bitter and pessimistic, but only because I really enjoy it.  Sorry to bust up the party.  :p

Lubyanka wrote:

 I'm bitter and pessimistic, but only because I really enjoy it.  Sorry to bust up the party.  :p

Some people enjoy it and that's fair enough - as long as your bitterness doesn't affect any one else in a negative way then what's the harm?

Rowan, sounds like you have done your research?! I'm the same, thirst for knowledge because knowledge is power after all! I think it's knowledge that has helped me deal with my "issues"

And yes, i do the same with my OH, he carries all the shopping, bless him

Congrats on your wonderful outlook!!

Ax

AdnaW wrote:

Lubyanka wrote:

 I'm bitter and pessimistic, but only because I really enjoy it.  Sorry to bust up the party.  :p

Some people enjoy it and that's fair enough - as long as your bitterness doesn't affect any one else in a negative way then what's the harm?

No harm, just saying.  :)

Lubyanka wrote:

 

AdnaW wrote:

Lubyanka wrote:

 I'm bitter and pessimistic, but only because I really enjoy it.  Sorry to bust up the party.  :p

Some people enjoy it and that's fair enough - as long as your bitterness doesn't affect any one else in a negative way then what's the harm?

No harm, just saying.  :)

Lol. This is evident Lubyanka! We appreciate you for who you are anyway. Everyone has pessimistic days or topics; some just like to share that more than others.

Rowan wrote:

Lubyanka wrote:

AdnaW wrote:

Lubyanka wrote:

 I'm bitter and pessimistic, but only because I really enjoy it.  Sorry to bust up the party.  :p

Some people enjoy it and that's fair enough - as long as your bitterness doesn't affect any one else in a negative way then what's the harm?

No harm, just saying.  :)

Lol. This is evident Lubyanka! We appreciate you for who you are anyway. Everyone has pessimistic days or topics; some just like to share that more than others.

Thank you Rowan, that's very understanding and accommodating of you.  Grr, dammit.  :)

(as AA mentioned in another thread, I'm bumping this to the top)

I have knees which dislocate easily....and as a symptom of another disability I have, I have very low muscle tone generally.

As I said in the other thread, I think I've figured out how to cope with missionary sex, but what about other positions?

Aside from figuring out how to get myself in (and out!) of different positions - how do I deal with the feelings of...shame when I can't do something, or of a lack of confidence?  I'm sorry, I'm not describing things very well...

Modifying one of my earlier posts in this thread to make it relevant to knees :)...

going on top can be very painful in long bursts, especially if your knees are weak and your muscles fatigue easily, but how about only doing it for a few minutes at a time? you still get to do it, but then you can switch to a more comfy position!....though on particularly bad knee days I'd avoid it all together.

I find going on top, then leaning down over him so I'm laying on him and him doing the thrusting can make it less painful on the knees too as it shifts the weight from the knees to the upper body.

Doggy can be less painful on the knees if you alter it...instead of all foors, lay down on your front and use a pillow to raise your hips and bum....even more intimate and sexy than doggy with half the pain....

Sucking cock? I lie down on my side on a pillow and get my OH to put his cock in front of my mouth, can suck just as well without the knee or back pain and less muscle work required! I also find, if he sits on a low setee then I can sit right between his legs so I am sitting more than kneeling, less painful than kneeling up whilst still having a sexy angle.

For 69 we lie side by side and I can use his leg as a head rest...this one is a little more awkward for him though.

As for the mental side of it all - it's a tough one - knowing you struggle to do something that you feel like you should be able to do is a horrible feeling. You really have to try and adjust the way you view these things. The fact that you want to make your sex life work despite your problems is something that many perfectly able bodied people don't think about. A happy relationship takes a bit of work and you've got the head start because you've got a reminder that sometimes take a little work :). And with adjustments you don't have to miss out on things - you just have to plan when and how you do things a little more carefully and prioritise the important things.

I find it helps to be open with my partner - he's so understanding. And I've really helped myself by realising sex isn't all about penetration and orgasming. It's about intimacy and connecting as a couple so if one day I can't manage sex because it hurts too much, we can have a gentle blow job, a naked cuddle or he can come in my mouth if I'm really, really sore and can't manage anything else. But I always prioritise some form of intimacy on a daily basis because I think it's important to our relationship :)

Hope some of this helps :)

Adx

 We had a similar problem, try something like a sex swing, which takes all the strain out of some positions, for example you could suspend it over the bed with you in the swing almost upright and you OH on his back underneath you thrusting up, you can do cowgirl or reverse cow girl.  Obviously there's loads of other positions as well. Have a look on Xhamster (sorry, porn site) and search for sex or love swings, that'll give you and idea. 

The other useful thing to try are shapes such as wedges and other furniture... there's loads in this section to look at, they support and position you 

http://www.lovehoney.co.uk/sex-toys/sex-toys-for-couples/

Have a look at Liberators stuff as well, they have some other things similar to above. 

If I'm on top I like to put cushions under my knees, that way it lifts you up so you're putting less strain on your hips and your knees are comfier. 

 Forgot to mention this, I have a cheaper version of this product and find that it really helps take the strain off my hips if I want to hold my legs up and wide for any length of time. 

http://www.lovehoney.co.uk/product.cfm?p=10806

Ugh!  It's the feeling inadequate that really gets to me....knowing that what I have to use pillows and tricks to achieve is something that other women in the main just do.

Thanks for the advice!  I will think about it...

 The low feeling about it is worst. But if you think about it, using pillows and having a partner who understands your pain and still being able to have enjoyable sex is very very good. Some women just 'do' it isjn't exactly true. Read around the forums and you'll find that quite a few people have difficulty in their sex life, whether it's from pain, or having low libido, or far too high libido, or unable to orgasm, or unable to just get in the mood, or low confidence or health problems or many other factors and we all find our own ways of dealing with it. So don't make the mistake of thinking that you are the only woman who has to make comprimises, though I understand that with pain it's a bit more difficult because it's not just the sexual need, but the pain aswell.

We all can come up with our own routines, and if pillows and different positioning works for you then you are doing great! You'll still be able to enjoy sex and if you pain is bad, you can find ways to keep the sexual contact in your relationshhip, even if it's just cuddling.

I greatly appreciate that it is a lot easier said than done. Definately. But I've given this thread a good read (even the bit abjout igloos!) last night, and I do feel a little more confident. Pillows seem so easy! You can get sex furniture as sharry said, but it is so expensive. Pillows and rolled up blankets , cushions and bed raisers and such are the easiest to obtain to give more support and confort, especially with backs, hips and knees. 

lol I know.  I don't honestly think that everyone else just 'does' anything - I just made the mistake of posting when I was in a pessimistic mood.   Sorry.

 And trust me, I know the feeling. My back has been playing up so I can't even lie in bed comfortabley. It can really feel like you are a bit useless and broken. But optimism, as difficult as it can be to obtain, is essentiol. Forget everything you know about sex and usethis as an oppertunity to learn eachothers likes and dislikes again. GO slowly znd spent loads of time with foreplay on eachother, kissing, cuddling,  nibbling, tracing eachothers bodies,  erotic massages etc and if you feel comfortable for sex then find your best position and go for it. But sex isn't just penetration. Masturbating in front of him is good, or pleasuring eachother in different wayx. sex toys are favb! If you are both ok with the idea I strongly suggest a male masturbator sleeve to use on him, and you don't need to worry too much about your position or suffering unnecissary pain. This works on both sides, if its you with the pain or your partnr. Me and my man love the Tenga egg if we are both in the right mood for it.

Well, in this case, I have a headstart, since I'm still a virgin - I don't have to unlearn anything.  I think my oh might have to, but we'll cross that bridge when we come to it.

I usually am optimistic - but I am tired, and then I feel bad because I'm in my early twenties, for goodness sake, I'm not supposed to be tired.  But I am.  And I think the occasional pessimistic moment is forgiveable. 

I know how you feel kunoichi. I'm 21 and every joint in my body hurts pretty much every minute of every day.

I can't shop, walk long distance, I walk with a stick now if I'm going to be on my feet for too long. I can't even get through the day without completely crashing and *needing* (no not just needing to, physically falling asleep wherever I am/whatever I'm doing) to sleep. It's so embarrassing to fall asleep in lectures, or sitting at my desk in the lab. I've even been known to hold on to the trolly in the supermarket and close my eyes whilst walking because I don't have much choice in the matter.

I take prescription painkillers every day and I still don't feel "normal" pain wise. And then there's the inability to ever be comfortable. The number of times I've cried myself to sleep at night because I can't find a position that doesn't hurt like crazy.

So I do know how you feel - my email is on my profile, feel free to contact me if you want to chat :)

The headstart I've had is that I've been deteriorating since I was 14/15 and I'm now 21 so I've had a lot of time to come to terms with it - and I've always been very positive (but we all have our negative moments so don't feel bad).

Once you can accept that this is you - which comes with time and work. And sure other women can just leap into bed but do they ever need to learn to make a man orgasm by only moving their tongue (that's a trick I'm pretty proud of!)? And they may have other things impacting on their sex life. Noone is perfect or has a perfect relationship - it's worth remembering that.

A good sex life is not about ability - it's about care and intimacy and love and wanting to put the effort in to making your partner happy and him doing the same in return.

See how many men on here are struggling with their partners lack of desire to satisfy them and how guilty those men feel for struggling with it. That's something I will never understand because I am so sensitive to my partners desires - partly because of the pain I'm always in - and if I don't feel like sex myself, I often want to try and stimulate myself mentally and get myself in the mood in order to satisfy and please my man and I think that effort (on both our parts) is what makes our sex life so strong :). So whilst it's far from perfect the pain does have its benefits :)

Again - feel free to email me if you want to chat. If you don't mind me asking - what is the cause of your joint issues?

Adx

 I completely appreciate that it can be hard. Nobody is happy and optomistic all the time. I'm only coming to terms now that my foot isn't going to get better after 14months of pain (which doesn't seem long in comparison to the others) and I'm 24. My partner suffers rhumatoid arthritus, reynads (sp?) disease and damaged tendons in his shoulder along with mechanical back pain and general wear and tear which is really difficult for us both. Sex is so difficult now and it's made worse with my own knee, hip, foot and back hurting (crutches being main cause for aches and pains.) So it's like the complications are doubled for us because we need to both be in the right frame of mind, comfortable etc.

ToyingAround wrote:

 I understand how you feel. I had bad knees and shoulder from several strains, activities over the years etc. I find a good ointment can work, such as joint mud, which is quite good, or go to the doctors and get something called Voltrarol. This often can ease the pain.

You can get Voltarol much cheaper from the pharmacy. It's not prescription only :).

Also - whilst it may work for a lot of joint problems there are some that it won't work for. For my own condition - painkillers (Votarol is an NSAID called diclofenac) just don't work very effectively. I take a heavy whack of prescription painkillers and only get a slight reduction.

Often with chronic pain conditions (which it sounds like is the issue for kunoichi because she mentions fatigue) you need to work with your medical team (I have seen rheumatologists, have a regular physio and am just being referred to a chronic pain clinic) in order to manage the condition long term. Certain activities can help prevent the damage causing pain such as pilates and tai chi but for a person with health issues you should check with your doctor before beginning any exercise (certain gym things should be avoided for people with joint problems such as running and rowing).

Just worth mentioning because many conditions have many different causes and therefore different treatments and it can be upsetting for sufferers when someone mentions a simple fix that turns out not to help all that much - chronic pain sufferers are often living in hope of the thing that solves all the problems but unfortunately it's not always as simple as that!

But we never know until we try and painkiller gels *can* help people out so Voltarol (from a pharmacy from than on prescription) is worth a go. It shouldn't be used with other NSAIDs either though so if you're taking ibuprofen, diclofenac, naproxen or other NSAIDs it should be avoided.

Adx