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marko2002 - November 28

Hello everyone, my name is Mark and I'm husband to Helen who was diagnosed with FMS nearly 2 years ago. It was around that time that I was also made redundant from my job and with the onset of this illness beginning to affect us both I took the decision to become Helen's full time carer as she was, by this point, in a severely depressed and bad way. I think the fact we didn't know anything about it contributed to Helen's depressed condition but I will say she had always suffered depression since we met (18 years ago).

I've always tried understanding depression througout our relationship and have had to compromise on many occassions, particularly when it came to sex. Initially, we had a great sex life and with the addition of 2 children (now aged 15 and 13) we are very much a tight family unit. But since Helen's diagnosis she very much appears to have went downhill overnight to the point where I anm beginning to feel unable to support her, not because I don't want to anymore or love her any less, but because no matter what I do it really doesn't seem to make any difference to the situation.

I've read and read and read all I can about FMS and have understood most of it, but Helen simply accepts she has this illness and can't do anything about it, again, most likely the depression is ruling her head.

I'm not shallow enough to believe FMS isn't the reason why our relationship seems to be drifting further apart but with depression and FMS combined I can see Helen laying down to this and allowing it to walk all over her. She was prescribed strong pain patches (fentanol) which seemed to alleviate some of the pain though caused her to have suicidal thoughts and massive sweats particularly at night to the point she simply couldn't sleep for any more than 1 hour at a time. She spoke to the Dr who reduced the dose but now she is more or less always in severe discomfort and it's like there simply isn't a suitable compromise with the drugs/symptoms!. As with most FMS sufferers, she still has trouble sleeping at night which generally means she tries sleeping often during the day.

We've spoke at length to the Dr who has referred Helen to the pain management clinic to hopefully try an injection which could alleviate the pain for up to 6 months at a time but that was at the beginning of this year and we're almost at the end.

I'm now beginning to feel there will never be a happy medium for Helen, with me now being responsible for the home, Helen and the kids it's hopefully not uncommon for us family members to feel washed out ourselves as I'd hate the thought of people thinking of me as selfish, I have basically given up attempting to initiate any form of physical contact whether it be a cuddle or sex because it's becoming way too rejecting for me and I feel our relationship is drifting way off track and I can't honestly remember the last time I felt truly affectionate to my wife nor her to me.

I hate feeling like this and any attempts in the past to talk to my wife have simply met with the "what do you expect to do!" attitude eventually.

I so desperately want my wife back and am scared to my very core that I will have to make a decision on our future sometime soon as I myself feel unable to continue with our relationship as it is too hurtful to be pushed away from the very person I fell in love with all those years ago and although I feel guilt and selfishness at my thoughts it's tearing me apart that my wife simply refuses to let me in to her pain and suffering so we can finally begin to work things out.

I guess I'm looking for others in a similar position and hopefully those who have had similar feelings to both Helen and I and who have maybe came through to the other side and how they did this. I remain hopeful :)
All the best
Mark

 

Fantod - November 29

Hullo Mark - What a difficult situation. My heart goes out to you and your family.

I've been thinking about your post since it first appeared. It has taken me all weekend to formulate a response.

First of all, it sounds like Helen is clinically depressed. Does she see a mental health professional? If not, she certainly should be and so should you and the children. Many people on this board see a counselor to help them develop better coping mechanisms. There is no shame in it and personally I find it very helpful.

If Helen has difficulty sleeping than she should have a sleep study done to eliminate any other underlying issues other than Fibromyalgia (FMS). Part of the reason she hurts so badly is because FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Muscles need deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain. And, a severe form of depression will amplify that even further.

Have you considered seeing a naturopathic doctor to see if they have a better way of handling Helen's illness? I use a mix of conventional and holistic medicine as I am super sensitive to medication. That seems to stike the right balance for me.

I realize the the British healthcare system is very slow but you need to press for the appointment with the pain clinic. I have a pain specialist in addition to a rheumotologist. They work in tandem and have had some success in managing my illness. I also wonder if what drugs Helen has tried in the past to get some relief. Has she tried milnacipran or anything else?

Diet is very important. Helen should not be eating any deep fried foods, lunchmeat or anything with an artifical sweetner. Any of these items will probably increase her overall pain level.

I don't think that you are selfish at all. You are tired from fighting an uphill battle every day. You are burned out from being the care giver to both Helen and the children. Can you ask family or friends to help out with some things or to at least give you some time away from the situation? Maybe see a movie or do something like a hobby for a couple of hours?
You need to have an outside interest to keep your sanity.

Helen is very lucky to have you. My own husband filed for divorce after over 20 years of marriage. However, he made little or no effort to understand the severity of my illness. I really think that the first step should be getting her depression issues under control. If she does see someone, perhaps it is time for a fresh set of eyes on the situation. Believe me when I tell you that she is every bit as lonely as you are. I can not express to you how difficult it is being trapped in a body that just doesn't work right anymore. Unfortunately, there was no happy ending for me. I hope that you can find some peace in your life. Perhaps one of my suggestions will be helpful to you. Take care and God Bless.

 

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