Fibromyalgia and Physical Intimacy

Disclaimer: I am not a medical professional but an FMS sufferer who is eager to spread awareness and to help other sufferers deal with this disease.

When even a kiss hurts

Intimacy, whether physical or emotional, is vitally important to maintaining a healthy long-term relationship. When you have a chronic pain condition like Fibromyalgia it can seem impossible to maintain physical intimacy, everything from kisses and cuddles to sex, because everything hurts.

There are a lot of reasons why your physical intimacy with your partner may be impacted when you have Fibromyalgia. The simplest one being that when you have FMS being touched hurts. There are other factors as well, ones that are easier to solve. Anxiety and depression often accompany living with any chronic disease, they can cause feelings of worthlessness and low self-esteem. On top of that, FMS forces you into a very sedentary lifestyle. It’s still important to exercise and stretch on a daily basis to keep pain low but most people with FMS have to spend the majority of their time sitting or laying down. You can no longer run around like you once could.

When you are in such constant pain and hypersensitivity your body no longer feels like something wonderful that you are sharing with your partner but an like enemy that is causing you so much pain.

Fortunately, if you and your partner are willing to put in the time and effort you can have physical intimacy in your life again.

Notice I said, you and your partner, not just you. It is essential that your partner is willing to devote time and effort to this as well. This is certainly not a problem you can solve on your own.

Dealing with the changes

Acceptance

Regaining physical intimacy in your relationship starts with acceptance. It’s normal to be in denial when you are first diagnosed with FMS bit it’s important to stop fighting it. FMS is an incurable, chronic condition. It’s never going away. You must accept that this is your life now and be open to finding new ways to maintain the intimacy you once had.

Communication

As I said above this is not a problem you can tackle on your own. Your partner must be by your side and you must both communicate with each other. Clearly you know this is a problem that needs to be fixed, since you’re reading this article, but have you talked to your partner about it?

Open the dialogue without pointing fingers. Talk about how you feel and let your partner know that this is something you need to work on together. “Ever since I got FMS our intimacy hasn’t been what it once was. I really want to be intimate again, but I’m going to need your help to figure out how. We need to be slow and gentle. Will you work with me on this?” is a great way to start the conversation.

Odds are you and your partner are both missing that intimacy equally. Openly discuss any changes that FMS has caused in your lifestyle that has changed the way you relate to your body and intimacy with your partner.

Have you gained weight? Are you more tired? For me, I have flare ups so bad that I can’t stand the touch of clothing on my skin. As a result, in my worst flares, I spend much of my time laying on the bed naked with a space heater to keep me warm. I no longer associated my naked form with anything even mildly attractive. Being naked meant being defeated and powerless against my pain. This severely impacted my ability to share my body with my husband.

Your partner should also discuss how they are feeling. Are they afraid to hurt you? Do they feel like you’re not interested in intimacy with them specifically? Are they aware of how much you want that intimacy back? These are all important questions to ask and answer.

Now that you and your partner are on the same page it’s time to take steps to regain that physical closeness you’ve lost, and along with it, the emotional and spiritual intimacy that is linked with it.

Feeling good about your body again

Stay physically active

If you’ve been reading up on FMS you’ll probably notice that every article on the subject encourages physical activity. For FMS sufferers moderate physical activity can relieve symptoms considerably, especially when done on a regular basis. It naturally follows that the better you feel, the easier it will be to enjoy physical intimacy and the better it will feel to be in your body.

Grooming

Above I mentioned how having FMS can affect your self esteem. I know it did mine. Simple grooming can make a huge difference in how you feel. Figure out which grooming techniques have the most effect on your self esteem. For me, when my legs are shaved and my eyebrows are shaped I feel great. For you it may be having silky hair and a little make up. These things are worth it, even if they do cause a little bit of pain, because they make you feel so much better mentally and emotionally. And, believe it or not, just feeling better about the way you look can have a positive effect on your pain.

Lounge wear

When you have FMS you can’t always wear the clothes that you used to feel beautiful in. Those jeans that made your bum look great may no longer be an option, ditto to anything tailored, belted or stiff in anyway. Walking around the house all day in sweats probably isn’t doing anything for your self esteem. Luckily, there’s beautiful lounge wear. Thank god for people with too much time and money. Before I got sick buying clothes specifically purposed for doing nothing seemed like the stupidest idea in the world to me. But afterwards, it makes a huge difference in the way I feel if I’m wearing a cute camisole pj set than if I’m wearing sweats and one of my husband’s old t-shirts.

Intimacy is not only for when your feeling good

When you are in a flare up period you’re feeling the worst physically, but it has a huge impact on how you feel inside as well. You may be feeling defeated, useless, frustrated and unattractive. It’s times like these when you feel like you just need a hug, but you know it will hurt too much.

On your worst days it can feel great to have your spouse just lay in bed next to you, either holding your hand (if that doesn’t hurt too much) or just staying close and talking.

It’s important to maintain that intimate connection even, if not especially, when your in a high pain period. Letting it peter out during these periods will carry over into the times when your feeling physically good, but emotionally not close to your partner.

Sex can actually relieve symptoms your FMS

When you’ve got high pain sex is probably the last thing on your mind. But if you can allow yourself to ease into it very slowly the endorphin and dopamine rush that it causes (with or without an orgasm) will often make you feel much better.

How to get physical intimacy back

Try not to set goals for your physical intimacy

When you were healthy you probably thought nothing of initiating sex, or responding when your partner did. You may have had a plan in mind, such as who was going to receive what etc. When you have chronic pain you need to throw all those plans and expectations out the window. Physical intimacy needs to be about one thing: intimacy. Sometimes you will be able to enjoy sex the way you used to but often times you may find that you become physically uncomfortable part way through, or that something may hurt where you didn’t expect it too. It needs to be okay to stop then, and not discontinue the intimacy. If you can’t have sex, cuddle. If cuddling becomes to painful lay hand in hand and talk. If your hand hurts, just talk. The important thing is maintaining that connection with your spouse so that you both feel loved, appreciated and affectionate.

Relaxing together

Odds are, if you have FMS, you’ve been working on relieving stress to keep your pain down (if you haven’t you should try some breathing, visualization and other relaxation techniques to reduce your pain). But have you tried trying to relax with your partner?

Try sharing baths, foot rubs, going to a café and having a cup of tea together. You can l lay next to each other in bed and read your own books, light a candle and talk about your future or your past, talk about dreams or your retirement together. Just share your time and your thoughts with each other in a relaxing and intimate environment.

Working together

Fostering physical intimacy is not just the responsibility of one person in a relationship. Both partners need to work together to find opportunities for physical intimacy that won’t aggravate FMS symptoms. As I said above communication is key, so what are the things that the healthy spouse, and the sick spouse can do to make it work?

For the FMS sufferer:

Figure out at what time in the day your pain is lowest and functioning is highest and plan to spend that time being physically close to each other. For me, that time is in the morning but my husband works during the day. So, we make sure that on the weekends, when he’s home with me, that we’re not making plans to get up and go right away. We can schedule most things so that in the morning we can have time to be together and foster that intimacy that just isn’t possible when he gets home from work and my symptoms are acting up.

Take the time to explore what positions and activities are easiest on your body. You may find that certain things are easier and more enjoyable than others, therefore you’ll be able to spend more timed doing them without dealing with your body’s repercussions.

Join a forum for FMS sufferers. Remember that you and your partner are not the only ones dealing with this. There are millions of people with FMS and many of them have partners. The struggles of physical intimacy when you have FMS are not often broached in the books or on the websites but when people feel safe behind a screen name they will talk about this aspect of our condition and how it effects every one of us.

For the healthy spouse:

The best thing you can do when trying to retain that physical intimacy you may have lost when your spouse got sick is to be patient. There are a lot of things that you once enjoyed that may be uncomfortable for him/her now. You are going to need to take the time to learn what has changed and how you can still give each other pleasure and enjoy each other’s closeness.

Never rush, and try not to harbour too many expectations. It can be frustrating but odds are it’s harder for your partner than it is for you. They know that this is affecting your relationship and yet they don’t know how to fix it without causing themselves pain. So take it slow, really slow.

Remember, your spouse can’t control their symptoms and if they get stressed out from feelings of guilt or pressure their pain is likely to get worse.

Join a forum for the spouses of FMS sufferers. There are plenty of them out there. It can be difficult to realize that when your spouse gets sick you may need support too. There are millions of people out there whose partners have FMS and who are struggling to retain that old intimacy. Learn from others and share your own experiences. Just knowing you’re not alone can help.

FMS has changed your lives and the dynamics of your relationship but with communication and determination you can get back that all important intimacy and keep your relationship strong despite your illness.

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Comments 6 comments

ar.colton profile image

ar.colton 4 years ago from Vancouver, B.C. Author

Wow, Sannel. I can't imagine making a decision like that. When I got sick I told my husband that I would understand if he couldn't handle it and needed to leave but in my heart I knew how much it would kill me if he took that option. You are a very strong and selfless person. But remember that sometimes you are worth it, and that other people need to be allowed to love you no matter how much of a burden you may think you are.


Sannel 4 years ago

I suffer from fibromyalgia and Chronic fatigue syndrome for years now, and it has changed my life dramatically. I am now divorced because of my diseases, even though I had the most understanding and loving husband I could have asked for. Some call me selfish, because I divorced my husband even though he loved me and I loved him, and still do, but when you are in constant pain, exhaustion and living in a severe fibro-fog 24/7 there even the slightest of stress and anxiety will make my symptoms worse, you may not think and do things the way "normal" people suppose to do, and to me having someone by my side was too stressful. My guilt and trying to sound and look happy not to make my husband sad took a toll on me. So in my situation, it was my husband that was understanding and willing to go to any lengths to help me, but I just couldn't handle it. My ex and I are still the best of friends and he supports my decision and will always be behind me, and that's what I need, a good friend. I have to come to terms that I will not share intimacy with anyone anymore, because it's just not working mentally for me. Thank you once again for a great written article. Blessings and a gentle hug from Sannel.


ar.colton profile image

ar.colton 4 years ago from Vancouver, B.C. Author

Hello Dabble,

Unfortunately that's a fairly accurate description. I have a number of hubs on FMS if your interested in learning more. In answer to your question though no, not really. There's no cure and most people (98% probably)don't recover. Some people experience periods of remission or find a medication that allows them to manage their symptoms more effectively but FMS is something you have for life. Thanks so much for your compassion, it means a lot to me to know I'm spreading awareness.


DabbleYou profile image

DabbleYou 4 years ago

It seems like having FMS is like being tortured on a day to day basis and it's sad many people suffer from it. Do the symptoms ever go away?


ar.colton profile image

ar.colton 4 years ago from Vancouver, B.C. Author

I'm so glad I could help Margie. It's really easy for us to forget that we're not the only ones dealing with FMS. It always makes me feel better knowing I'm not alone. And that's so wonderful that your hubby read it too! Love supportive husbands!


Mmargie1966 profile image

Mmargie1966 4 years ago from Gainesville, GA

Thank you so much, ar! I too am an FMS patient. My husband and I both read this hub and it was extremely helpful! We are already doing most of what you suggest, however, it is still very frustrating at times. The reinforcement of what's truly happening, and the encouragement you offer has helped tremendously!

Thanks again ~

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