Sjogrens Syndrome / Lupus - impact on intimacy

Hello Lovehoney.

V ocasional poster here - hope this is the right location for it!

A bit of a long shot as they're quite specific conditions, however generic internet wasn't coming up with much that was useful...

Sjogrens attacks mucous membranes and causes significant joint inflamation (akin to some other AI conditions) I'm fairly newly diagnosed, so symptoms not too severe.

Am finding lube can thus far deal with any vaginal dryness, however, occasional extreme dryness in my mouth is having a big impact on intimacy, (kissing just for starters!) I'm trying to keep hydrated, avoid caffiene/ spice etc. Any advice would be wonderful.

Also! Am very fond of restraint play, if anyone had knowledge of resources dealing with how to do this safely in light of joint problems that would also be very much appreciated.

As I say, more in hope thn expectation, but thanks in advance.

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Thanks for your response Alicia, do you know that hadn't even occurred to me!

It's definitely worth a shot. x

Really apreciate you taking the time to repond.

I had thought about ice, icecream and berries sound much more fun though. (Maybe need to stock up on sensodyne toothpaste!)

Just using common sense re the joints so far (accepted super flexible days are gone) have bought some sturdy cushioned cuffs! Will do a bit of searching online, just don't want to aggrivate anything underlying.

I do hope you get to put your own advice into practice soon. ![](upload://ez5kOkpKXRZOxjavAURYmQxVTau.gif)

Many thanks again x

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I have a kind of inflammatory arthritis. For vaginal dryness try regular use of Replens moisturiser and also Vagifem (from your GP if you are anywhere near menopause) as well as a more heavy duty lube. A silicome one, or Sliquid Natural Gel is a good hybrid if you want to use it with toys / condoms. For a dry mouth try Cava kisses! Take a bottle of fizz upstairs with you and pass sips between you. Flavoured cooking oils could work too eg rosemary enfused olive oil? Give the the garlic infusions a miss ;-). Gentle restraints should be ok unless you stay in the same position for too long, which will make your joints stiff and painful. Move around in between. Good luck!

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Hi there.

I’m a medical student and is currently studying these conditions. I was thinking that I might add something to the topic but would like to point out that I’m not an expert so the best thing is to always talk to your MD or rheumatologist.

There are currently some saliva substitutes you can get at a pharmacy which could help with kissing as they lubricate your mouth.

There are also some tablets available that are called Pilocarpine (muscarinic agonists) which can help with your dry mouth. They require some function in your salival glands. They are meant to be used prior to situations that could be difficult to the patient. I’ve mostly read that people use them if they are going to have a speach or having dinner with friends, but I don’t see why they could not be of use if you know beforehand that you might be kissing or having oral sex with your partner.

My recommendation would be to talk to your doctor about this, hopefully you can get some valueable advice.

Thank you all for the very practical solutions. Icecream and cava aren't such terrible compromises! Food for thought indeed.

MsR - think it's definitely worth pursuing longer term options re vaginal lubricants. Good to have some reassurance from someone dealing with similar joint issues too.

Sxleksaker, v much appreciate having something concrete to approach my G.P with, as they have been fairly clueless!

Cheers!

I’m just happy if something I say might be of use for someone :)

I wrote a massive spiel for you and the forum server crashed....pfft...try again..

Ok so, fake / supplement saliva..gel, spray, mouthwash, toothpaste. Google Biotene, I use this with my clients it’s the best stuff you can get. Maybe get the Gel & spray to start. It’s tasteless.

Rules for unstable, hyper mobile, subluxations Not & dislocating joints...

Read up on joint protection https://www.arthritisresearchuk.org/~/media/Files/Arthritis-information/Living-with-arthritis/2055-Looking-after-your-joints.ashx basic theory is to look after your joints. Don’t do what I do and carry one shopping bag per finger....

Applied to your bondage question here are some rules you should follow..

1) Safe word (gesture if your gagged). Any pain in your joints then stop and adjust. No question. No 5 more minutes. Just do it.

2) Get stronger - if your joints are getting less stable because of the cartilage in ligaments getting stretchier or changing in composition you need to increase muscle mass around the joint allowing your tendons to help out. Go swimming, cycling, walking - get stronger.

3) No knots directly against a joint, this risks destabilising the joint and increases risk of dislocation and subluxation.

4) No extreme stretching of the joint, if you pull your finger straight out making it as long as possible that’s what I mean by stretching. Make sure you either have some slack or put the joint into mild flexion ( a bit bent ).

5) No hyper extension of the joints, don’t bend them further than you can naturally move them. This is really really important with your incongruent joints which are designed to move on multiple axis e.g hips , shoulders, Atlas joint (between head and neck). This is because these joints are not really stable anyway and rely on a lot of muscle and ligaments to keep them in place.

6) Use nice firm, wide leather cuffs, tight as you like though to get strapped down.  You can even place them over the joints like ankles and wrists to assist  stabilise the joint. Whatever you do don’t position the cuffs so that they are causing hyper extension though ( example of hyper extension , straighten your elbow out fully, then push it as far as it will go, that’s hyper extension ). This includes wearing a cuff and moving your wrist hard to hold the ropes...

7) If you’re going to pick him up and throw him on the bed, bend your knees. Your spine is a row of joints designed to bend and flex, don’t hyper extend (bend backwards) beyond your normal range of movement and avoid lifting twists.

8) I would normally prescribe a Lycra orthitic suit for younger people with Ehlos Danlos Or joint hypermobility syndrome but a tailor made latex catsuit would work the same way, just provides a bit more stability through the joints...I dunno what you think? 

9) You need to know that during the time of the month, women’s joints get stretchier anyway so just be aware and a bit more sensible leading up to, during and just after your period. Also if you’re at the life stage of wanting to get pregnant, be aware that if you do your joints will again n become more bendy. Also don’t forget to mention this to the Dr / Midwife ( not that you like to be strapped up, just about your joints) (Well I suppose you could share if you like? Your call!)...

10) There is a lot of info here, please make sure you bookmark the joint protection link you’ll need it to understand what’s going on. It seems like a lot right now and you are probably a bit scared but you will be ok hon and in a years time you’ll be doing all this stuff automatically ( Well maybe except for the Dr Midwife thing or the latex).

If this post creates more questions ask away, I’ve added you as a friend but I hope what I wrote (again) makes sense and helps you to keep being you X

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Hmm sorry

point 8 I went off into hypermobility spiel sorry. I also perscribe dynamic movement orthosis for Arthritis and other auto immune inflammatory diseases of the bones. As you may have guessed I’m a therapist.

Wow, that's amazingly comprehensive Mr Pheebs! I need to really digest it but just wanted to respond to say thanks.

I really appreciate you taking the time to get that all down, information tailored to my predilections seemed fairly scarce when I was searching and that is all really useful (and reassuring) info.

Catsuit is a great idea, slight pressure does seem to bring some relief.

My partner was a climbing instructor so thankfully is pretty well versed in ropes and knots( I knew what I ws looking for!) and has been very reponsive re the diagnosis, so probably better placed than I could be from that perspective.

Thank you so much again, you've given me some great starting points, as you say to help keep being me. Definite Kudos! x

I’m really glad I can help you both. Any other questions, gimme a shout X I spent years working with client bases with Muscoloskeletal difficulties. Keep safe...Maybe don’t go rock climbing!

It's safe to say I won't be scaling any cliffs!

Thanks again Mr Pheebs x

Bumping this thread with some resources :slight_smile: I’ve been doing some reading on the Lupus Foundation and Sjogren’s Foundation websites and came across a couple sex articles that I wanted to share with anyone on here who is (or has a partner who is) suffering from these diseases :purple_heart:

Sex and Sjögren’s

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