• Cfs, me, fibromyalgia sex life tips??

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    Vanilla_Kink [sign in to see picture]
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    Anyone suffering from the above mentioned or similar have any tips on maintaining a decent sex life? I'm always so exhausted, no matter how horny I am I just can't find the energy. My partner has a high sex drive and the once a week I am managing at the moment isn't nearly enough for him. He takes it personally and that breaks my heart as I love him so much and am so sexually attracted to him :( it's just really bringing me down at the moment as I feel like such a useless girlfriend. Any advice would be appreciated so much xx

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    Sinfully Sam [sign in to see picture]
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    I do not personally suffer from any of those ailments, but I may be able to recommend something that could help.

    The Liberator Wedge Ramp Combo (found here: http://www.lovehoney.co.uk/product.cfm?p=8853) is a godsend for anybody with a condition that might make aspects of intimacy difficult.

    The blocks elevate your body while supporting it, meaning that you don’t need to strain yourself at all. They also have the added benefit of being incredibly versatile, so the configuration opportunities are just about endless. Really, the only limit is your imagination. The wedges offer a unique experience, giving your partner full access and the freedom to try an array of positions while still making it possible for your own body to stay at rest. There’s no need to exert yourself at all – you simply settle into a comfortable position and enjoy what comes next.

    The high price is a bit unfortunate, but I’d say it’s definitely worth it in the long run. :)

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    Vanilla_Kink [sign in to see picture]
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    Thank you :) I have added it to my wishlist but may be a while before I can afford to buy it. I can see it making things a lot easier and more comfortable for me x

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    Luscious Libby [sign in to see picture]
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    I have fibromyalgia and hypothyroidism and am struggling to find a balance between them and sex too! For me the pain and fatigue makes sex difficult particularly things like oral sex and masturbating. So I too am interested in any tips. I have started to accept the need to use toys more to replace/ help with oral and masturbating.

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    VR [sign in to see picture]
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    Oh, V_K and LL, I feel your pain.

    Making sure you're in a comfortable position is probably your best bet. I don't have a wedge, but I do make use of pillows etc.

    It's a given for me now that I will no longer be able to contort myself into past positions, or have ultra-long sessions. What we concentrate on now is the position of the moment and making sure I don't tire in it. That's where the support comes in. I physically can no longer change positions more than once or twice now, so we get comfortably settled. It may sound boring, but it isn't, as long as we communicate our mood before starting.

    It's a horrible thing when you can no longer do what you used to take for granted. And being in pain and fatigue as well can be even more miserable. Can you time medication to use it to advantage?

    Toys are definitely the way to go to help out. Not that speeding things up is the way to go, but if you're starting to tire and the finishing post is nowhere in sight, a helping hand is always appreciated.

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    Vanilla_Kink [sign in to see picture]
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    Thank you very much vr! Reading your post has made me realise that I am trying to have sex like anyone else would and that is why I'm finding it so hard. I need to take your advice on board and have sex in a way that is comfortable for me. Even if that takes away from my partners experience at least I will be enjoying it too. Of course he's talking of leaving me because of my tiredness anyway so it could all be redundant :(

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    Luscious Libby [sign in to see picture]
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    Hi Vk, sorry to hear your partner is not very supportive. It's hard enough to come to terms with being unable to do things you once could isn't it. I am finding it harder and harder to do things like giving oral sex and hand jobs and sometimes push myself too far! My hubby is understanding but I starting to wrap me in cotton wool so to speak and sex is becoming non existent, I recently talked to him about it and he says he is scared of hurting me. Has your partner discussed your condition with you at all?

    Hi Vr, I haven't actually tried using wedges or pillows yet but I think it's something I need to look into now.

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    Aqualaria [sign in to see picture]
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    Hello Vanilla_Kink and Luscious Libby,

    My partner has been diagnosed with fibromyalgia with a bit of CFS thrown in too (she has had symptoms for at least a decade), and we still have a full and varied sex life most of the time. It takes a lot of work, but from my perspective it is worth it.

    Vk, your partner really needs to understand that he really needs to be supportive and to work with you to maximise your sex life. The first thing is nothing to do with sex. The less energy you have to waste on activities, the more you can use on stuff you want to do. Just popping upstairs to get that hairbrush may seem like nothing to him, but do that 5 times a day, and suddenly, that is an amount of energy worth saving to you. We have a routine of bits and pieces that I do, as preparation for her day, allowing her to maximise what she gets done (sex related or not).

    It is the hardest thing for anyone with a debilitating condition to admit there are things that they used to be able to do, but no longer can't. But the sooner you do, the sooner you can start making important but subtle changes to help with your energy levels. So, thing we have done include ergonomic organisation (ie tray by the sofa with things she is likely to need on it (eg, medicines, TV remotes, cordless phone and plugged in charger)). This is replicated upstairs by the bed and in the office. Make sure the dishwasher is loaded each night (she does that) and unloaded each morning (I do that before I go to work). Routine is everything, but it can make a massive difference to her functioning on a day-to-day basis.

    Now, moving on to sex. The first thing is that she knows that I would be in her twice a day every day if I could. But sometimes, she just can't, and she knows that is OK. I don't pester her or badger her, but if she says she wants a shag, I'm there. I also know that if she even the slightest bit in the mood, she tells me, so that I start on foreplay to get her gagging for it. We go through periods where we shag every day or couple of days, and sometimes we don't shag for a couple of weeks.

    Now, there are some things she really struggles with, because of the energy and how painful her hands can get. So, blow jobs and hand jobs are difficult, and we rarely do them. Not that I mind, I would much rather be buried in her pussy or arse anyway, but I am aware some people would mind. I love it when she is on top or in charge, but that happens rarely, again, because of energy. In fact, it happens even less these days, as when she does have the energy to be on top, we tend to have her using the strap-on on me, as she and I both absolutely love that.

    Position is everything, so most of the time, it is her lying on her back, with her legs up supported on my shoulders, or legs down for a less deep penetration. I also sometimes twist, and that helps to get a deeper penetration with her legs down. For anal, on her front with her legs down, although you can raise her body a little by supporting her on pillows. On her side works quite well for anal - we have a single bed up against a wall so she can press her front against a wall whilst I drive in behind. All the time, it is about finding positions that allow for support for he body, and meaning that her muscles don't need to hold her limbs or body in any given position unsupported for too long. If you chose careful positions, you can have a long session (we can easily do a couple of hours, if we chose carefully).

    One thing that has happened with us, is that sometimes she is horny, but hasn't got the energy to move far, so we often shag elsewhere in the home. On the sofa is favourite (we had to get a strong sofa!), on her back at the top of the stairs, or bent over at the bottom of the stairs. I liked bending her over the arms of the sofa, but that was hard on her legs, so didn't work well. So basically, if one position doesn't work, next time try something slightly different.

    Finally, we have "filth". Sometimes she hasn't got the energy for penetrative sex, but wants to do something, so that is wear "filth" comes in. Mostly, this refers to watersports, which normally is fairly easy on her body if I do the clear-up, but filth is unlikely to lead to penetrative sex, which means we can have a long session at the day's chosen kink, and she does not have to hold energy back to shag.

    So, to summarise, it is like everything else - you have to chose what you do carefully, so as not to waste energy. I have to say that because of having to do this, we have found some much more interesting positions that we otherwise might.

    I hope that is of some help, as I have tried to outline the strategy that works for us.

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    Vanilla_Kink [sign in to see picture]
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    Thank you ll. I wish my partner would be more supportive, I think I put a brave face on and push myself to my limit all the time so maybe it's hard for him to realise what I'm going through and how hard it really is. I had no idea the hand pain I get was connected, that's interesting. To be honest after 8 years of struggling I'm only now really pushing the gp for a diagnosis. I was hoping it may come up as something else but it's not looking good.

    Aqualaria your advice is fantastic, thank you. One of the issues I have with sex is that my partner likes a lot of foreplay which is really exhausting for me. He would do foreplay for hours if he could. If we had shorter sessions I think I could manage them more frequently. It's reached a stage where I feel sick with worry whenever I see him because I know he wants me to have sex but I just never feel up to it. I always enjoy it when I do it but it's just so hard.

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    Aqualaria [sign in to see picture]
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    Vk, it all depends on particular activities. For example, my good lady can have her nipples sucked for hours, but she could not play with my cock for long, as her hands would hurt. You need to look at what individual activities tire you the most and try to avoid those. So, as a general rule, me working on her is fine. Her working on me is dependent on which particular activity it is, and what day it is.

    I do have to say we don't do too much foreplay for the reasons you suggest. Does your partner want a session of foreplay, or does he want a bit of foreplay and the main event? I am afraid those are the options - sounds like you can't do a long session of foreplay and a shag later, just like my partner.

    I am really sad that your other half is talking about leaving you because of your tiredness. He really needs to step up and help you to manage your fatigue, and every little bit he does to help will improve your day-to-day life. If he were to leave you, or even threaten to, it says more about him than it says about you. I hope he is receptive to helping you. *hug*

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    Aqualaria [sign in to see picture]
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    Oh, I forgot to say your this line you said really worried me. "It's reached a stage where I feel sick with worry whenever I see him because I know he wants me to have sex but I just never feel up to it."
    For any relationship to work, communication is the key. Is he not willing to talk about things, or is that when he talks about leaving you?

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    Luscious Libby [sign in to see picture]
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    Thankyou for the tips Aqualaria 😀, it's nice to hear from a partners perspective.

    Vk have you asked your gp to refer you to a rheumatologist? My gp did basic bloods and then referred me to a rheumatologist. it was my widespread muscle and joint pain that prompted the gp to refer me. The rheumatologist diagnosed fibromyalgia from my other symptoms and tender points., I thought I had rheumatoid arthritis. After diagnosis when I looked up fibromyalgia I realised how many of my other niggles were actually connected to the fibro. It's also worth having your thyroid checked as hypothyroidism is common with fibromyalgia and can also cause pain and fatigue amongst other things.

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    VR [sign in to see picture]
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    V_K I've had a really bad day today and OH is tired and in a bad mood. When he's in a bad mood it's a real PITA as nothing gets done without me nagging, which makes him worse and upsets me. It's all a kind of life-cycle we now live through. So, I understand where you're coming from with regards to your feelings about being useless, but you must stop. It's now time to get an action plan together so you both know what you're up against. If you don't talk to him about how deeply you feel, it's time to start - he's not a mind-reader. As a quick-fix, is there somewhere you love being touched by him that could be your "on" switch? Even if you're not completely turned on, invest in a good lube so that your body feels turned on. Sometimes, knowing you're physically ready will be the "on" switch itself.

    You need to sit down with him and talk your feelings through - even then it's not going to be all plain sailing. Resentment is a pretty ugly thing that can rise on both sides, and needs to be controlled before it does real damage. Try talking to someone from CarersUK. They've seen it all before. They may also be able to help with advocacy if you feel your GP isn't doing enough. Sometimes we're labelled at the doctor's (I was, and it's not nice!) unfairly. It only takes one GP to write something derogative on your notes, then most of the others will follow the lead, without looking further into the problem. Again, there are so many mimics out there - and a few malingerers who give genuine cases a bad name. Wrong in itself as thorough examinations and referrals should weed them out.

    I was diagnosed with fibro several years ago, but have since had a diagnosis of LETM (and am now crapping myself as I have gone downhill really fast in the last year). Have you had anyone test you specifically for fibro or other things? You SO need a good GP in your corner who will send you to as many specialists as needed until you get a diagnosis. In the meantime, ask for help with medications. You shouldn't be suffering like this.

    The myriad of conditions that mimic each other are almost limitless, so getting the correct diagnosis is key. I was diagnosed with MS on physical symptoms 20 years ago, but my brain MRI was clear. If they'd scanned a few inches lower into my spinal cord, they'd have seen damage on the MRI and I'd have avoided years of being labelled, amongst many other things, lazy (fatigue has probably been the most disruptive of my symptoms up until last year).

    If you can go private, go. Ask for a neurologist if you're not 100% sure it's fibro. They'd probably be your best bet. I broke both my legs in a fall (caused by LETM symptoms) several years ago, and since then I had countless tests and endless waiting for an orthopaedic surgeon. It was only when I spoke to a diabetic who described their burning/stabbing pain exactly like mine that the penny dropped I should be seeing a nerve not bone specialist. Since my first neuro appointment, diagnosis has been a long time coming, but finally fallen in place.

    And although a rheumatologist diagnosed fibro, it didn't explain everything, so make sure you get every avenue explored to avoid those damn mimics.

    I suppose what I'm trying to say is that until a diagnosis, doubt will always be present - especially if your partner has had a hard day himself (that lovely resentment again!). My OH's face when I was diagnosed was a picture - he frequently got annoyed with me when things weren't done or I asked him for help. Now he's aware that my awful fatigue is nothing to do with me being "lazy" he's a bit more sympathetic. Though not all the time - but he's only human.

    I also wanted to mention that I use wool pillows, bought initially to help my night-time asthma symptoms. The ones I use have a zip that allows me to add or remove the wool stuffing. I can re-arrange it to be softer or firmer and these pillows have been amazing for support during sleep and sex. I can also work a shape into them and they're a nice large size. If I can't get into position, I now ask for help (so far away from my athletic days, it's no longer funny, but if it gets the job done...). We also make it a bit of a guessing game in that he doesn't tell me what he wants, just kind of gets me into position!

    Please hold in there. You're sounding a bit depressed (a diagnosis in itself might help there, if you can get the right meds - Prozac literally saved my life), and having been there, I can honestly say there's nothing worse.

    I hope this helps a bit and that you finally get the help and support you need from everyone who should be doing just that.

    x

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    Vanilla_Kink [sign in to see picture]
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    Thank you all for your advice. My partner has decided to leave me as he said he doesn't think he has a great future with me the way I am. Which is harsh but up to him I suppose. At least won't have to worry about finding the energy anymore.

    VR I am undiagnosed at the moment. Drs have given me b12 injections and folate tablets but they haven't had any effect on me unfortunately. They have been exploring dietary causes so far, coeliac and crohns. But no luck. I am very concerned about the hand pain as it has worsened a lot recently. I am unable to finish a meal as holding the cutlery gets too painful.

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    tear drop [sign in to see picture]
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    Oh VK
    I'm do sorry for you it's hard reading your posts


    Hugs galore to you

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    Luscious Libby [sign in to see picture]
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    Vk, so sorry to hear that your partner has decided to leave you because of your illness! I really think you should be referred to a rheumatologist, have you asked the gp if they would refer you? Also have you had your thyroid checked? A tip for blood tests is to always have them done first thing in the morning as later can give results that appear in normal ranges when in reality they are not.

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    sub2silk [sign in to see picture]
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    Vanilla_Kink, i am sure you have thought of this but have you posted on the forums of sites that cater to the conditions it sounds like you may have? I am going through a coeliac disease diagnosis now (positive blood test) and know that others have had the issues that i have, perhaps somene may have gone through what you are now. It has helped me confirm that i am not going mad.

    Sorry that you are going through what you are, and hope that you find a way to manage with everything, we are here if you need to chat.

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    Vanilla_Kink [sign in to see picture]
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    Thank you tear drop, definitely in need of hugs at the moment x

    Luscious Libby I had never heard of a rheumatologist to be honest! I have an appointment with gp next week after my last round of tests for crohns and I'm going to discuss the hand and leg pain I get as I have only really focused on the fatigue and digestion problems previously. Thank you for your advice on the blood tests, I will make sure to book them in the mornings xx

    Sub2silk it's difficult as I'm undiagnosed at the moment I don't really know which forum to go to. It seems I have symptoms of many different things I have just always assumed it's chronic fatigue syndrome. Good luck with your coeliac diagnosis, I hope you will feel better once you are without the gluten. X

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    Dali256 [sign in to see picture]
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    Im sorry to hear your partner has left vanilla, its really harsh of him to go before you even know whats wrong. I have a lot of experiance of ME/CFS and it can cause all sorts of weird pains, some of them severe but its important you keep pushing the Drs to explore every other condition or problem first.

    There are a few ME/CFS forums but not many to be honest. Id post a link but im not sure if thats allowed here?

    Best of luck to you

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    Terri JJ [sign in to see picture]
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    I have Bechet's syndrome, which is an inflammatory condition......I don't mind if you Google it. My rheumatologists have been a godsend. I currently take 23 tablets a day and inject myself in my stomach weekly. Chronic fatigue is a huge problem.

    Insist on and push for a diagnosis. There are all kinds of treatments which could be very beneficial to you. And ask questions.....I didn't to start with but I sure as hell do now ! It's your body and you have every right to know what's going on.

    I really hope you can get things moving and your health begins to improve .....sending huge hugs xx

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