being in a relationship with someone who with chronic pain/illness

[deadelvis]

I was just hoping someone could share some inspirational stories about being in a relationship with someone who suffers from chronic pain/illness. It's been really taking a toll on our sex life, social life, personal lives, finances, etc.

 

Sometimes it's hard to see a future together when your partner is in constant pain. I want more than anything for her to get better so we can have a happy and normal life together, but it just seems like an impossible wish. Lately it's been really hitting me hard. I try to be positive and supportive, but sometimes it's difficult.

 

I'm only 33 and I feel more like a caregiver than a boyfriend.

 

Any positive thoughts or stories?

[deadelvis]

I don't have a positive story for you, but I'll give you my story.

 

When I was in my mid 20's, I dated a girl that had Fibromyalgia. Her life was hell. She had to go to the doctor's office often, she couldn't get a job, let alone hold one, and she slept around 14 hours a day. Like you, I spent a ton of time taking care of this girl. She was in the process of applying for disability, because she couldn't get a job. As it turns out, it was all a sham. Since it is difficult to diagnose chronic pain, doctors just have to take your word for it. My ex did it for the drugs, among other things. She got free drugs, many of which she sold when she was low on cash, she wasn't expected to hold a job, and she always had people taking care of her. Sweet gig, right?

 

I have known three people who claimed they had chronic pain. Two of them I know were faking in order to receive benefits, and the other is probably faking as well. I do know that she has spent some time in a mental hospital. She is frickin nuts.

 

I have considered that possibility. Her situation is similar. But she had such a happy life before becoming sick. I do think she's dependent on painkillers, but considering how miserable this illness has made her, I doubt it's a sham. She would love more than anything to have a normal life, a job, a social life, etc. but the illness has taken all that away from her. And she's been to so many specialists trying to figure out what's wrong with her. She could have just continued living with the diagnosis of "fibromyaglia" and gotten all the painkillers she needs, but instead she's been desperately trying to "solve the mystery" and get proper treatment.

 

On a side note, I think fibromyalgia is actually just a doctors way of saying "I have no idea why you're in pain". She was diagnosed with Fibromyalgia for a few years but I always knew there was something else going on. Now that she's been seeing specialists it turns out she has other "diagnosable" conditions with long latin names that I can't even pronounce. I think most people with fibromyalgia are actually suffering from something else but the doctors are either too lazy or unqualified to give a real diagnosis. But I agree there are plenty of fakers out there, and fibromyalgia is a perfect way to fake an illness for drugs.

[newmoon]

my bff is in a marriage w/a woman who is chronically ill. her issues throughout the years have ranged, but she is what you'd refer to as a 'sickly' individual. he takes a lot of time off work to care for her, take her to appointments, etc. he seems stressed, at times, but he married her knowing that she wasn't a well person. it's something that you have to deal w/all the time, so you have to just be willing to take that on. he cancels events and activities a lot, because of her. i sometimes think her issues are used as excuses, but i'm not positive. they can use that as a tool to influence the partner, i think. your bond with the person, from what i have seen, needs to be more of a best friend than a romantic partner, because at times they need a lot of support and romance does get tabled.

[central]

If you can't have a satisfactory sex life, then move on. You do not OWE her a relationship, when a good relationship is not possible.

 

My wife has had several long term debilitating illnesses, but nothing has affected her passion and desire for me and for sex. If anything, that is one of the few things that has kept her going, given her joy in life, and given her the strength to find solutions to her problems. Because of her passion and determination, we've solved several of her problems, and I think we'll deal with the rest as well.

[MidwestUSA]

If you can't have a satisfactory sex life, then move on. You do not OWE her a relationship, when a good relationship is not possible.

 

My wife has had several long term debilitating illnesses, but nothing has affected her passion and desire for me and for sex. If anything, that is one of the few things that has kept her going, given her joy in life, and given her the strength to find solutions to her problems. Because of her passion and determination, we've solved several of her problems, and I think we'll deal with the rest as well.

 

I have a chronic pain condition, as well as numerous herniated disks and a couple of joints that need to be replaced.

 

And I have a husband like you who keeps me going. Bravo!

 

Sex => endorphins => less pain! Even well after menopause.

[acrosstheuniverse]

It's really tough to live in chronic pain. Has your partner continued to attend the doctors to ensure she's getting the best pain relief possible?

 

I started with chronic pain when I was only 17, ten years later it's still there but much easier to handle now that I am on strong painkillers. It took me a good four years to even make it to the pain clinic, and several years there to start to be prescribed things strong enough to help! It hurts my sex life, sex can be super painful sometimes.

 

I don't know what to advise other than to make sure you know that this isn't her fault. I don't know what kind of pain she gets, does she do everything she can to manage it? Mine is bladder and pelvic pain so I drink four litres of water per day, I take antibiotics every time I have sex or I get a UTI (without FAIL!) and I take morphine and pregabalin every day too. I'm lucky, before the morphine I was given buprenorphine which made me so tired I could hardly work, I was only on it four months but kept falling asleep at work, at the wheel of my car etc! The morphine gives me the pain relief but without the exhausting. I consider myself so fortunate these days because I know that I'm well enough to work (I have never been unemployed but my sick record suffered for months at a time when I wasn't yet on painkillers or get a major flare). It's funny because most people would find this type of daily illness hell but compared to how it used to be, I feel like I won the lottery.

 

It was so hard for my ex though when things were at their worst, we struggled with our sex life of course, but more than anything it was hard for him to see me in constant pain, sometimes up all night because I couldn't sleep, having to come home from work so regularly and losing money through that, getting into debt because I wasn't qualifying for disability allowance etc. (in my country you only get it if it affects your mobility, mine doesn't thankfully).

 

All I can say is that it takes a strong person to be willing to be with someone who's in so much pain on a constant basis. It's really hard, if you can't handle it it's no reflection on you. I think it's harder when the person can't live a normal life, can't work etc. but luckily for me if I didn't tell you about it these days, you'd never know. Despite my drug tests showing up like the Blackpool illuminations haha. I can say that what is good for me in a relationship is that my partner treats me as someone who is occasionally sick, doesn't blame me for it, doesn't make me feel guilty if we can't have sex, treats me with care and love when I'm at my worst and doesn't make me feel as though it's too much for him to handle. Not sure how he'd have held up during the worst years though, despite him being a saint. At times even I wished I was alone because being around people was too uncomfortable when I just wanted to be alone in the bathroom for days on end.

[katiegrl]

I have considered that possibility. Her situation is similar. But she had such a happy life before becoming sick. I do think she's dependent on painkillers, but considering how miserable this illness has made her, I doubt it's a sham. She would love more than anything to have a normal life, a job, a social life, etc. but the illness has taken all that away from her. And she's been to so many specialists trying to figure out what's wrong with her. She could have just continued living with the diagnosis of "fibromyaglia" and gotten all the painkillers she needs, but instead she's been desperately trying to "solve the mystery" and get proper treatment.

 

On a side note, I think fibromyalgia is actually just a doctors way of saying "I have no idea why you're in pain". She was diagnosed with Fibromyalgia for a few years but I always knew there was something else going on. Now that she's been seeing specialists it turns out she has other "diagnosable" conditions with long latin names that I can't even pronounce. I think most people with fibromyalgia are actually suffering from something else but the doctors are either too lazy or unqualified to give a real diagnosis. But I agree there are plenty of fakers out there, and fibromyalgia is a perfect way to fake an illness for drugs.

 

 

Is she the same girl you have posted about previously?

 

 

The one who doesn't work, doesn't do chores, lives in her jammies all day - the one for whom YOU do all the cooking, cleaning, financially support, pay her car payment, etc etc etc.....

 

 

If so, so then yeah I agree with Diezel, she's faking and you need to get away from her as fast as you can!

 

 

It's been debated by the medical community if fibromyalgia is even real.

 

 

-----------------------

 

 

>>"The American College of Rheumatology/Association of Rheumatology Health Professionals, Anthony Russell, MD, and Leslie Crofford, MD, debated whether fibromyalgia is a true disease, and discussed the best way to approach patients who present with the characteristic symptoms.

 

Russell basically took the position that fibromyalgia does not rise to the level of discrete, measurable, observable disease, instead preferring to view it as a social disorder that is determined by societal, historical, and other factors and contexts." <<

 

The meds that are prescribed for "fibromyalgia" are the same meds prescribed for anxiety and depression.

[PogoStick]

I would be concerned both from her and a physician, if she's being treated with opiates. They're really only meant for use of a few weeks for acute pain or when used with end of life care. There are many other options for treating chronic pain.

 

It's not fair to suggest fibromyalgia isn't real. Whether anyone knows its true mechanism is irrelevant. Whether it's mental, physical, or a combination, there is some condition going on but what it's named doesn't change anything.

 

It's completely in the realm of possibility that some people have a malfunctioning nervous system that is hypersensitive or always sending unprovoked pain signals.

 

Finally, pain is one of those difficult things. In the medical community "pain is whatever the patient says it is". Medical staff have no choice but to believe what the patient tells them and it's considered unethical/professional to question the patient's experience.

[acrosstheuniverse]

I would be concerned both from her and a physician, if she's being treated with opiates. They're really only meant for use of a few weeks for acute pain or when used with end of life care. There are many other options for treating chronic pain.

 

I'm afraid I have to disagree with you there (and so would both of my past pain consultants, and my doctors), for some people chronic pain is so bad, strong opiates are the only option to get it under control.

 

I tried SSRI antidepressants first, many kinds, then moved onto medications like gabapentin and pregabalin which tend to work on neuropathic pain. I tried Nabilone, a type of synthetic cannabis that's usually used to treat nausea in chemo patients, Tramadol, and then tried Ketamine (yep, prescroption), a strong dissociative, followed by Buprenorphine (the next best thing to opiates for most people but gave me SUCH insane levels of drowsiness I couldn't work or drive) and then finally morphine. Morphine has been a godsend to me, I've been on it three years and it's given me my life back. I don't get any negative side effects, just wonderful pain relief. Oh forgot to mention I also tried acupuncture, local anaesthetic, bladder instillations and also epidurals, a trial of a sacral nerve neuromodulator implanted into my lower back, and a spinal tap (caudal nerve block). None of those things has come close enough to managing the pain with so few side effects as morphine.

 

I for one am so relieved and glad that my medical team believed me on something so subjective as pain. Of course you can't question whether patients are lying or not when they talk about pain, otherwise you risk not treating people who are genuine. If there are red flags, then it totally is questioned (history of addiction, asking for repeat prescriptions faster than the medication should have been used up etc.) and a decision can be made to try something different.

 

Long term opiates are not given out like smarties. Most medical teams use them as a last resort, but if they give somebody a quality of life that is missing from other less strong medications (and to be fair it's no more 'strong' than Buprenorphine, or Ketamine and several others, it's just a different class with its own sets of side effects and benefits) then it's absolutely appropriate for a patient's care. Usually they're at the end of a long road (it took me about six years of working through other drugs, in serious pain every day or too zoned out to be able to properly work, I always held my jobs down just had a lot of time off sick, imagine working in a bank on Ketamine lol), once all other options have been exhausted.

[BC1980]

I can only tell you what I've observed over the years as a nurse. Often times, people who deal with chronic pain do become addicted to prescription meds. The fact is that prescription opioids are highly addictive, so it's not really the patient's fault. It's just a very sad side effect that I've often seen. I've seen the same with people who suffer from anxiety and take benzos. The nature of those meds is just that they are highly addictive.

 

Usually (again, from what I've seen), the long terms partners of patients who deal with chronic pain are enablers. They seem to enjoy the caretaker role. I think you need to be ver careful about falling in the role of caretaker/enabler. Sometimes, people with chronic pain (or any chronic illness) start to enjoy being sick because they get attention and like to play the victim. Again, I can only tell you what I've observed, but I have observed quite a bit over the years. I'm constantly surprised at the number of people who are addicted to prescription pain killers and benzos.

 

My honest opinion is that your situation with you GF is not likely to improve. Chronic conditions don't improve. If she truly does have fibromyalgia, then my heart goes out to her because I wouldn't wish that on anyone. Chronic pain issues (sickle cell, arthritis) truly can ruin your life, and it's not fair. On the other hand, I don't necessarily think that it's your duty to become her caretaker.

Edited October 12, 2015 by BC1980

[truthtripper]

A lot of the comments here are so judgemental it's disgusting.

It seems the only way you can understand the pain and suffering of chronic illness, is to to be struck down with it yourselves. What gives you license to judge the way you do-and with so much scorn? Shame on you all. What goes around comes around.

[truthtripper]

I was just hoping someone could share some inspirational stories about being in a relationship with someone who suffers from chronic pain/illness. It's been really taking a toll on our sex life, social life, personal lives, finances, etc.

 

Sometimes it's hard to see a future together when your partner is in constant pain. I want more than anything for her to get better so we can have a happy and normal life together, but it just seems like an impossible wish. Lately it's been really hitting me hard. I try to be positive and supportive, but sometimes it's difficult.

 

I'm only 33 and I feel more like a caregiver than a boyfriend.

 

Any positive thoughts or stories?

If your partner has muscle/joint issues, feldenkrais therapy can be really helpful.

[BC1980]

A lot of the comments here are so judgemental it's disgusting.

It seems the only way you can understand the pain and suffering of chronic illness, is to to be struck down with it yourselves. What gives you license to judge the way you do-and with so much scorn? Shame on you all. What goes around comes around.

 

Exactly. You can only understand the pain and suffering if you've experienced it, and that is true of anything in life. Most of the people who posted are expressing what they have experienced. Again, only they can understand it from their POVs. I've never dealt with chronic pain, so I can only offer what I've seen from my POV. It seems pretty awful from both sides in my estimation, and I wouldn't wish it on anyone.

[PogoStick]

I'm afraid I have to disagree with you there (and so would both of my past pain consultants, and my doctors)

 

I tried SSRI antidepressants first, many kinds, then moved onto medications like gabapentin and pregabalin which tend to work on neuropathic pain. I tried Nabilone, a type of synthetic cannabis that's usually used to treat nausea in chemo patients, Tramadol, and then tried Ketamine (yep, prescroption), a strong dissociative, followed by Buprenorphine (the next best thing to opiates for most people but gave me SUCH insane levels of drowsiness I couldn't work or drive) and then finally morphine. Morphine has been a godsend to me, I've been on it three years and it's given me my life back. I don't get any negative side effects, just wonderful pain relief. Oh forgot to mention I also tried acupuncture, local anaesthetic, bladder instillations and also epidurals, a trial of a sacral nerve neuromodulator implanted into my lower back, and a spinal tap (caudal nerve block). None of those things has come close enough to managing the pain with so few side effects as morphine.

 

Most medical teams use them as a last resort, but if they give somebody a quality of life that is missing from other less strong medications (and to be fair it's no more 'strong' than Buprenorphine, or Ketamine and several others, it's just a different class with its own sets of side effects and benefits)

Sounds like you and your Drs agree with me. Opiates are used as a last resort.

[truthtripper]

I would be concerned both from her and a physician, if she's being treated with opiates. They're really only meant for use of a few weeks for acute pain or when used with end of life care. There are many other options for treating chronic pain.

 

It's not fair to suggest fibromyalgia isn't real. Whether anyone knows its true mechanism is irrelevant. Whether it's mental, physical, or a combination, there is some condition going on but what it's named doesn't change anything.

 

It's completely in the realm of possibility that some people have a malfunctioning nervous system that is hypersensitive or always sending unprovoked pain signals.

 

Finally, pain is one of those difficult things. In the medical community "pain is whatever the patient says it is". Medical staff have no choice but to believe what the patient tells them and it's considered unethical/professional to question the patient's experience.

Neurological research shows that the pain felt in chronic illness is real, caused by positive feedback loops ie: pain is felt in a certain area of the body, this information is then sent to the brain which reinforces the information which is sent back to the body part etc....which creates an endless cycle of constant pain.

[truthtripper]

I can only tell you what I've observed over the years as a nurse. Often times, people who deal with chronic pain do become addicted to prescription meds. The fact is that prescription opioids are highly addictive, so it's not really the patient's fault. It's just a very sad side effect that I've often seen. I've seen the same with people who suffer from anxiety and take benzos. The nature of those meds is just that they are highly addictive.

 

Usually (again, from what I've seen), the long terms partners of patients who deal with chronic pain are enablers. They seem to enjoy the caretaker role. I think you need to be ver careful about falling in the role of caretaker/enabler. Sometimes, people with chronic pain (or any chronic illness) start to enjoy being sick because they get attention and like to play the victim. Again, I can only tell you what I've observed, but I have observed quite a bit over the years. I'm constantly surprised at the number of people who are addicted to prescription pain killers and benzos.

 

My honest opinion is that your situation with you GF is not likely to improve. Chronic conditions don't improve. If she truly does have fibromyalgia, then my heart goes out to her because I wouldn't wish that on anyone. Chronic pain issues (sickle cell, arthritis) truly can ruin your life, and it's not fair. On the other hand, I don't necessarily think that it's your duty to become her caretaker.

I would be careful not cross-label the terms carer and enabler. They are two completely different roles. When a family member/ partner is ill, they are cared for out of love, not out of succumbing to relationship dysfunction.

[truthtripper]

I don't have a positive story for you, but I'll give you my story.

 

When I was in my mid 20's, I dated a girl that had Fibromyalgia. Her life was hell. She had to go to the doctor's office often, she couldn't get a job, let alone hold one, and she slept around 14 hours a day. Like you, I spent a ton of time taking care of this girl. She was in the process of applying for disability, because she couldn't get a job. As it turns out, it was all a sham. Since it is difficult to diagnose chronic pain, doctors just have to take your word for it. My ex did it for the drugs, among other things. She got free drugs, many of which she sold when she was low on cash, she wasn't expected to hold a job, and she always had people taking care of her. Sweet gig, right?

 

I have known three people who claimed they had chronic pain. Two of them I know were faking in order to receive benefits, and the other is probably faking as well. I do know that she has spent some time in a mental hospital. She is frickin nuts.

People take drugs to escape reality, right? Obviously there was some issue(s) in her life she needed to flee from, otherwise she wouldn't have been taking drugs in the first place. People don't behave the way they do just for the hell of it. It's much more than a "sweet gig".

[truthtripper]

I think most people with fibromyalgia are actually suffering from something else but the doctors are either too lazy or unqualified to give a real diagnosis.

Standard or orthodox doctors, the doctors we usually go to, are simply not trained to research into the causes of illness. They serve us well, only if the illnesses are readily identifiable ie:the illnesses they have learnt about at med school. They are only trained to treat, not to research. Integrative doctors on the other hand, look into nutrition/diet and will do extensive tests to find solutions. Leaky gut syndrome(nutrients are not absorbed properly into the blood stream and leak out through the gut wall into surrounding tissues which accumulate in the body), can cause many "medically unexplained" illnesses as this particular syndrome is not recognised by orthodox doctors.

Edited October 13, 2015 by truthtripper

[acrosstheuniverse]

Sounds like you and your Drs agree with me. Opiates are used as a last resort.

 

That's not what you said. You said that opiates are meant to be used for a few weeks only or in end of life care. That's very different to a last resort. Opiates can safely be used long term in managing chronic pain, even if the patient isn't terminally ill.

[BC1980]

I would be careful not cross-label the terms carer and enabler. They are two completely different roles. When a family member/ partner is ill, they are cared for out of love, not out of succumbing to relationship dysfunction.

 

I agree that it's different. I often wonder if the relationship started out as one partner caring for another but then slipping into a different dynamic. Again, I can only say what I've seen from my perspective. I think it would be extremely exhausting to care for a partner with a chronic illness, but I also don't think it's the fault of the person who suffers with a chronic illness.

 

Still, I can't blame the OP for not seeing a long term with his current GF given what he's described.