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Living With Fibromyalgia - Online Support Group

Fibro and your love life

#1

Okay so this is my third discussion and I apologize for all the questions but you guys are all like the old wise guy on top of a mountain, I get more information from here than anywhere haha! And I love you guys for it <3 thank you so much!

Okay so lately I have found that fibro has made my love life a lot more dull. It's hard because I can't accept physical affections like most people. My skin is so sensitive to touch my fiance will be stroking my arm and I have to tell him to stop because it hurts. He's so supportive and he's trying so hard to understand what's going on with me but its hard because I don't even understand. I'm not really talking about sex at all, even though it does interfere with that, I'm talking about the basic affections we need from our loved ones. When he kisses me his beard hurts my face. Even holding my hand makes me irritated. I was just wondering if there are any ways to get past this? I'm not one for massages they hurt a lot for me but there has gotta be something I can use when I want to cuddle him without causing me pain.

#2

I wish I could help Holly but I have the same problem. My husband has a bad habit of squeezing my leg (not hard) but to me it's excrutiating. His feelings get hurt, because he has fibro too, and his skin is not "uber" sensitive like mine. I'm embarassed to tell how long it's been since we were "intimate". Don't know whether it's menopause or I'm just so tired and sore I'm so not interested. I wonder how many others feel this way? Charlie :(

#3

I feel like its a big issue that's not discussed as much as others. Relationships are important and for people like us they help us feel less alone. So far the best solution I have found is I just tell him EXACTLY what I like and don't like. It leaves us limited but at least theres some affection, and when the pain control is dealt with maybe it will change but I have no idea. We need to come up with ideas.

#4

I have been considering asking this also but I will take it a step further. Sex for me HURTS! I may be ok the first 30 -60 seconds but it turns into stabbing pain. It kills him when I wince and ruins all intimacy. I a take a oxycodone an hour or so before which also ruins the mood and neither of us like me taking such heavy pain meds. I have the worlds best and most supportive husband but this is becoming a problem and I am at a loss as to how to deal with it. It doesn’t help that like most of you I am not big on touching or cuddling because it is so uncomfortable… ideas?

#5

I never knew being touched can hurt with fibro. Is it odd that I don’t have that symptom?

#6

Sometimes it hurts for me too but honestly 99% of the time its because of your mindset during it. You need to be as comfortable as possible and with fibro that can be quite difficult but you can't give up on it. Of course as it begins to hurt you lose that spark and its no longer a turn on for you, it's just torture, which happens to me too. When this happens ask him to stop and for a while do some foreplay, get comfortable, and try again. You need to make it as enjoyable for you as possible because having sex is one of the best painkillers there is! If you have any secret fantasies, which I'm sure you do, we are all human here! Tell him and make it about YOU, also music helps take your mind off pain, and if none of this works. Lube is a girls best friend in times like these. I'm sorry I'm quite blunt but sometimes you have to be to get the information you want haha!

#7

No I just think it depends on who you are and how sensitive you are. My doctor said it's completely normal, its kinda a stress thing too. When we are tense we feel pain a lot more, and my anxiety is through the roof so it makes me extra sensitive.

#8

Yes...I agree with you as it's so hard to have a relationship when we are in pain...that is why i avoid this topic all together but am feeling very down as i would love to have someone to hug and kiss, and just be close to...this is all i want to say for now as it triggers my deep emotions and i have to keep my mind in check....I would like to know if anyone else feels this way...or if you have any other ideas on how to implement a loving relationship into my fibro life.

#9

My anxiety as of late has been the same. Finally went to the doc and he put me on anti-depressants and some adivan for my anxiety attacks. I tried everything to pull myself out of it because I didn’t want to go back on the depression meds. It’s been a week today and I will say I do feel better emotionally. I have never experienced any pain from anyone touching me I am happy to say. Gosh, that must be horrible. So sorry.

#10

I love your bluntness. I have no problem talking about sex. I actually used to teach sex ed for many years. No problems being blunt. I have tried it ALL I could make lists to make people blush probably. Usually the times when it is totally spontaneous and my mindset is.100% there - Iam the master of truly believing this time will be different. It’s those times when I usually end up wishing I was dead ten minutes after. It hurts during but I push through as determined as can be and BAM it falls apart. I have a best friend that isn’t a fibro but a massage therapist specializing in fibro (unfortunately she lives 3000 miles away). She has gotten texts at all hours of the fay with me crying because I did it and it hurt so bad.

Today my husband came home to workout over lunch, when he got out of the shower I suggested a quickie (it’s taken me two days to build up the courage to want sex) it’s been two weeks probably. He said it wasn’t a good idea. I started crying not because I felt insulted but because I feel defeated. I should explain I have a rare symptom with my fibro where if my body is over stressed (usually by pain but can be any stress emotional, temperature, etc.) I have full body muscle spasms that look like epileptic seizures. I have to have a shot of ativan to stop them. I was in a flare yesterday. Better today, but he thought I already did to much plus would be alone after since he has to go back to work. Ugh.

Sexually we have been a mess for 3.5 yrs. In addition to undiagnosed fibro I had a bad partial hysterectomy. Everytime we had sex after it hurt AND I bled. The last time I didn’t just bleed. It was a horror movie. The doctor (not the surgeon, I had changed) finally found a vein uncauterized in my vaginal wall’s incision. He cauterized it and I was healed in a few weeks. Trust me I have done it all. I just find myself feeling so helpless- I can’t work and we are drowning in debt thanks to my 6 surgeries and 7 hospitalizations plus books of tests and doctor visits. I used to make great money, I used to struggle with sex but pain was always tolerable. I am trying to embrace this new life, but things like this seem beyond me and it hurts.

Sorry for the book. This hit very hard today :frowning:

#11

My skin sensitivity per say is always there slightly BUT if I flare it can get to the point that just the weight of a sheet or light blanket hurts. My doctor tells me it is very normal. I do notice I am almost always very sensitive in areas around certain tender points. We always hug friends hello/goodbye. I cringe every single time because without a doubt they will pat my back and I want to scream. I am not willing to give this part of life and relationships up so I just go with it.

#12

Oh geeze! I thought it was just the fibro you were talking about when it came to sex, that is really awful! Have you spoken to your doctor about it specifically? Maybe theres something he can give you? I don't feel like the pain is all from fibromyalgia because it should NEVER hurt that much, but you pretty much cleared that up, your poor vagina! I couldn't imagine having fibromyalgia and having to deal with those other issues as well. I hope everything works out for you <3

#13

Hi, I don't know how old you are, but I had severe pain also. I told my family doc, he suggested romance, what a jerk! After that I talked to a female nurse, she suggested a hormone suppository (no side effects). It worked wonders for the pain. Unfortunatly it does nothing for my libido :( Charlie

#14

I hear you, I feel the same way. My boyfriend of 6 yrs started cheating on me and left me because I wasn't in the mood or it hurt and he wanted more sex and I was just content with understanding and affection in other ways, which he denied me. I am now very alone and I have not found a way to implement, keep or start a love life either and I am only 36 and that chapter in my life is over :(

#15

Holly, I don't have answers for you but thought this article might help to explain what's going on with your skin, in regards to fibro:

From the Skin Tissue to the Brain

It all signals pain!
How can you hurt from head to toe? Research shows the pain control system in the skin, spinal cord, and brain of fibromyalgia patients is overloaded, offering a reason for why you ache all over. In particular, immune cells that generally do not cause pain contribute to the flu-like fibro symptoms that make your whole body hurt.

Nerve Fibers in Skin

Alterations in the way the central nervous system (brain and spinal cord) works are believed to be a major cause of your fibromyalgia pain, but researchers are finding that’s not the only source. The immune cells surrounding the nerve endings in your skin appear to be contributing to your pain as well. Seong-Ho Kim, M.D. and colleagues in South Korea took tiny biopsies of the skin tissue from a group of fibromyalgia patients and compared them to healthy controls.1
They found that most of the fibromyalgia patients, but none of the controls, showed enlarged or ballooned Schwann cells. These cells, which look like a string of sausage links, encase the nerve fibers that connect your spinal cord to peripheral tissues like your skin and muscles. These fibers relay information from your tissues to your spinal cord, and vice versa.
Under normal situations, Schwann cells provide nutritional support and protection for nerves. But since they are part of your immune system, they are always surveying the nearby environment to make sure nothing happens to threaten or harm your nerves.
Enlarged Schwann cells are in an activated state, usually triggered by infections and tissue injury. When activated, these cells pump out pain-causing chemicals to prompt your immune system to clean up debris and help repair damaged tissues. But in people with fibromyalgia, something unusual happens.
Although the Schwann cells are enlarged, there are no obvious signs of tissue injury in fibromyalgia patients’ skin. But everything is not normal. When their skin is examined under an electron microscope, the pain-producing chemicals secreted by the immune cells are present in high concentrations.2 These chemicals, called cytokines, activate nearby nerve endings and make the skin hurt. Cytokines are also elevated in the blood and can cause flu-like achiness everywhere.

Faulty Pain Filter

In order for you to actually feel pain, transmissions from your skin, muscles and other tissues has to reach a level of consciousness in your brain. Otherwise, all sensations, including light touch, would hurt. That’s where your spinal cord comes in handy. The cord’s role is to filter out the less serious nerve signals traveling from your tissues to your brain and from your brain out to your tissues. In essence, your spinal cord works like a pain filter, but studies show it’s doing a poor job in fibromyalgia patients.
Kim’s team suspects that fibro patients have too many signals are traveling down through the cord to the tiny nerves in the skin, causing the fibers to become overstimulated. The Schwann cells attempt to keep pace by clearing out the waste products and debris, while providing nutrients to the overworked nerve fibers. In the process, they become enlarged.
How do ballooned Schwann cells impact your pain? They secrete pain-promoting cytokines that irritate nearby nerve fibers. The irritated nerve fibers in the skin then start relaying signals back to your spinal cord, saying, “Ouch … help me out!” But the cord fails to filter the signals and the brain shoots more transmissions back to the tissues. This process leaves you with painful skin, even though it looks normal. The same situation likely occurs in your muscles to make them ache.

Spinal Cord Opioids

When experiencing fibro pain, you would think the neurons in your spinal cord and brain would release lots of pain-killers to get your symptoms under control. Operating under this assumption, James Baraniuk, M.D., of Georgetown University, and Daniel Clauw, M.D., of the University of Michigan in Ann Arbor, measured the spinal fluid level of naturally produced opioid-like endorphins called enkephalins. They compared a fibro group to chronic low back pain patients (regional pain) and healthy pain-free controls.3
The concentration of enkephalins in the fibromyalgia group was almost fourfold greater than the controls, but pain alone was not the reason for this difference. The enkephalin levels were almost as high in the chronic back pain patients (people with less areas that hurt). This means a fibro patient’s spinal cord is pouring out natural pain-killers (e.g., enkephalins) to contain the pain, but it’s probably inadequate to relieve the many areas that hurt.

Opioid Receptors in Brain

You may wonder if the high concentration of enkephalins in the spinal fluid (which bathes the brain) are not properly activating the pain-relieving centers in your brain. After all, given the high concentrations of spinal opioids, you should not be in so much pain.
Clauw’s team measured the number of receptor sites in the brain that opioid-like substances target to put out the pain. He compared a group of fibromyalgia patients to a group of healthy controls using brain imaging.4
The fibromyalgia patients had fewer opioid receptors available in their brains to regulate pain. Why? Either the elevated amount of enkephalins (opioid-like substances) in the spinal fluid are monopolizing most of your brain’s receptors or there just are not enough of them to get your pain under control.

So Why Do You Hurt?

Assuming you are producing plenty of opioid-like substsances to target the pain-relieving receptors in your brain, why do you still hurt all over? Researchers don’t know all the details, but the foregoing findings offer some important clues.
Studies show the skin is a source of continuous pain transmissions traveling to your spinal cord. The cytokines produced by enlarged Schwann cells cause local irritation, which would be expected for injuries or infections, but there is no evidence of destroyed tissue in fibro. Yet cytokines continue to be produced for unclear reasons, causing your flu-like achiness.
Substantial elevations of the opioid-like enkephalins in your spinal fluid could be doing more than trying to provide analgesia. They might also be activating the immune cells in your spinal cord to produce pain-promoting cytokines, and one study indicates this is the case.5
Your body is trying to put out your pain by producing large amounts of opioid-like endorphins (e.g., enkephalins). But opioids don’t just relieve pain, they also activate immune cells to release cytokines to help heal injuries (usually a temporary process). Despite no signs of tissue destruction in fibro, your immune system seems to think there is. This means your body’s attempts to ease discomfort backfires (e.g., the pain-promoting cytokines win out over the opioids), leading to more rather than less pain.
Curious about other symptoms caused by pain-promoting cytokines and your treatment options? The topic was covered in the Summer 2012 issue of the Fibromyalgia Network Journal. Get more with Membership. Learn about Member benefits.
#16

Thank you everyone for all your messages…It’s been a while since i have been here but just got a link to the new site…now i have lots to catch up on…LOL

In conclusion to the topic…I have given my troubles and worries to our Lord who I trust will help me deal with this…I have noticed the more i worry about it the more i am in pain…It’s really hard to let it go but you have to consider what’s right for you and any individual who deals with this disease…

{{{{Warm Hugs}}}}

#17

I can relate some what…my thing is …who wants to date a sock women?