For those of you who are married with FM, have any of you noticed a strain in your marriage because of your symptoms? I was feeling great for a few weeks, so I knew I was due for a flare up and sure enough, it hit over this past weekend. I was bed ridden between Saturday and Monday with a terrible migraine and than last night, in the middle of the night, I woke up with my body throbbing with pain. You know how your foot begins to hurt and throb when it "wakes up" after being asleep? My whole body was experiencing that whole sensation last night. I don't really know what to make of it. Since last night, I can't pin point my symptoms other than to say that I just feel run down, and I just don't feel right. Im only taking Lyrica so It's not a case of medication withdrawal and I have felt these symptoms in the past. Just wondering if anyone can offter any insight or is this just strictly limited to me. Anyways, the symptoms are straining my marriage to a point where I'm not sure how long it will last under the strain. My husband wants me to be happy and healthy, well so do I, but its not that easy for me and I don't think he really understands. He says he does, but I don't see how he can. Not unless he experiences the pain, frustration, and lack of energy that I feel on a daily basis. I know he tries, but even he has said that if we don't get a handle on this, he doesn't know how much longer we are going to last. Any insight is helpful. Thanks
Hello April,
Oh I so feel for you, and can completely relate to what you are saying. It is ahuge amount for a partner to deal with, and of course he can't really understand, no-one can unless they are going through it. There are some things on-line that you can point him towards, to help him understand. I think communication is key, keep telling him how you feel, where you pain is and what you need to do. My partner is very supportive and does lots of things he knows i can't do. He has tried to find out about this condition, and has even come to groups with me. However there are times when I know he doesn't really understand, at least he tries hard.
Don't know how useful this post is, guess I am trying to highlight how difficult this condition is, and how it may take partners a while to get a grip on this. Good luck
Take care, Anne
Hey Annie, thank you so much for your info. I really appreciate the insight. My husband and I have been fighting this when I was diagnosed 6 yrs ago back in 09" It's sad that only 6 yrs ago, they still didn't have a lot of info on FM. When my doctor told me what was wrong with me, I said "ok, how do we treat it, whats the cure?' All he could do was shrug is shoulders and say, "there are some experimental treatments that may or may not work, but there is not cure'. My husband and I set out to educate ourselves but there was very little info out there, In the mean time the migraines persisted, and the random muscle aches and pains and the fatigue set in and got worse as time went on. I went through Savella, Gabapentin, Celexa, Cymbalta (allergic to) and finally Lyrica which so far has cost me a small fortune just to buy (after ins) and still does not seem to be effective. Maybe I'm just not up to that "therapeutic dose" yet. Anyways, I'm getting off track here. Between going on and off disability,( as I'm in the med. field and its hard to pull a 12 hr shift with an FM flare up) plus the cost of all my meds and co pays for my neurologist, pain mgmt., and my regular GP, and than the extra slack my husband has to pick up when I'm down and out with a migraine (which is more often than not) its really pushing my husband to his breaking point. He has been there for me and helped me more than I deserve and all's I can give him is a lifetime of uncertainty. He wants me to be active and healthy and on top of things like I used to be, and I can't make him understand that I am not that person anymore. Why does he stick around and put himself through this? He can escape it and live the life he want's, I can't live that life anymore and I don't want him to stick around because he feels he has to. This whole initial posting was prompted because he wanted me to buy some new tennis shoes so we could go walking, but I'm in the middle of a flare up, that frustrated him and we got into an argument about hit. He doesn't get that I am in the middle of a bad flare up and I the last thing I want to talk about is taking a walk, I don't even want to discuss it!!! Does anyone know if there is possibly a support group for loved ones of those who have FM. A forum on this site maybe for those not inflicted that could go on here and see other FM peoples point of view and comm. with other people going through what they are? If that made any sense, It might be helpful.
Hi,
I think every marriage goes through this at some point, it is hard for our spouses because they don’t know what to do, but it is even harder for us because we live with a illness that doesn’t receive very much respect. It has taken my husband and I a long time to figure out how to except what I have and even then it still takes a lot of work. I don’t know if this will help but I really have to share how I am feeling and I also try to get him to share the things he misses. Also, I realized he wasn’t even touching me anymore because he was afraid to hurt me, so I started showing him that I still like to be held and that it is ok if he causes me a little pain to give me a huge loving hug. So we are trying to bring some things back into our marriage that slowly disappeared. I know this might not be exactly what kind of help you are looking for but I thought I would share some things that have just came into my life. We deserve compassion and to be loved, after all we didn’t ask for this illness. Hugs Madison13
Good morning Anne, April and Madison,
This conversation is exactly what I need at this moment. I have had FM for more than 10 years. It has slowly gotten worse over past few years with bad are ups. The body pain and chest pain is horrible at times. Anyway, before the pain became unmanageable, I encouraged my husband to leave his high stress management position at a large corporation because I saw him getting stressed and feared it would effect his health. Now I am primary bread winner. My husband can take back his management position any time he wants and make a large salary which would allow me to work less. I am a nurse working 12 hour shifts full time including overtime. I am afraid and will not take the lyrica prescribed to me in the day time because I have to stay mentally Sharp carding for very I’ll patients. So of course my days off are spent in fetal position in pain. When I feel good I go to the gym and try to be active as possible which is in my best interest. My husband does not try to understand what I am dealing with. I think if he really understood how much pain I am in he would take back his position and let me work less. I am angry that he doesn’t help me. She. I try to go down in dose of cymbalta that does not help my symptoms I really get angry about my situation and start to hate him. So for the sake of my two beautiful teen age girls I take 120mg of cymbalta daily and try to keep smiling. I just don’t know how much longer I can do this. I am a nurse and teach patients and their families about illnesses and management of symptom but can’t seem to get my own husband to listen. Anyone have any advise? His answer to me is " well on your days off you shouldn’t do anything just rest". But he does not pick up the slack.
Thanks for the opportunity to vent. Have no one to talk to about this. If nothing else hope I made someone feel better about their own situation. Just feeling sorry for myself.
Always remember to try to take care of yourself . Do what’s best for you in your situation and don’t give up on trying making your spouse understand. I guess we all need to be patient in this situation. There is the cymbalta kicking in. Lol
I remember the night I finally got through to my husband (at least, this time; I've found every year or two, we have to go through it all again). He was complaining about me not being able to get out of bed. I had had it with his dramatic sighs and 'coaching' crap. I pulled myself up into a sitting position and looked at him and said, "I'm going to ask you something - and before you respond, I want you to think. I want you to wait a full minute before responding to really THINK about this... ready? ... Do you think I want to be like this? Do you think I would choose to lose my life piece by piece until all that is left is pain? Do you think I choose pain? ... Now, before you respond... if you know that no sane person would ever CHOOSE this, think about what it feels like to have this - to be in constant pain - and then be made to feel bad about it. "
I had to really keep shh-ing him to make him wait, but he finally stopped and thought about it. I asked to remember back to the beginning of our marriage when all I wanted was a love letter... but he isn't a writer. I valued the idea so much because I am the writer... and I had to stop blaming him for what he just couldn't do. And so, he too had to learn not to blame me for what I cannot control... what, frankly, I'd give a minimum of HALF of the life I have left just to live the other half without this. When I asked him if there was anything he'd be willing to give that much up for, he said he'd give it up for me to live my whole life without this.
I guess my point is... don't give up. Keep trying to explain. Find different ways of looking at it until you find the right 'lens' for him to look at it through. Keep communicating, even when it feels like you speak different languages. Because when it comes to FMS, 'keep trying' is the only medicine we really have...
HUGS
Thank you for your insight. You are right. I am just loosing patients with it all. We must keep trying in all areas of our lives that FM effects. Can’t let it take over.
P.s. you are a great writer.
Hi Ladies,
This is why this site is so helpful, we can all talk and listen without being judged and we all need that. When it comes to personal relationships we are able to share things we have tried and hopefully we all gain some insight and ideas on how to handle our own issues. I know I always feel better when I share, the problem might still be there but it is nice to write it down and receive feedback. Hugs Madison
Hi April. I have only been diagnosed with fibro for a year now, but had the symptoms for awhile. My husband is getting used to the fact that I don’t/can’t know how I might feel one day to the next. Planning trips, however small, is really hard to do. So, the only thing I can control each day is to do my best. Pace myself when I am feeling good but still take advantage of the moment & the good days. Take care of myself & rest on the " I feel like crap" days. He is usually pretty understanding but every so often he will say something like “You are sick & hurt every weekend”–to which I reply “Now Honey you know that isn’t true” & he nods his head in agreement. It is hard for me but sometimes I feel like he takes it harder than I do! I still work full time & I have told him that I intend to continue to work until we get our home paid off in 4 years. So, he knows what I am going thru to a degree & he appreciates the fact that I want to help pay off the house before considering quitting my job. We have a farm so there is always plenty to do. I help him on the farm when I can & we work well as a team. I have learned to pretty much take it one day at a time & I believe that my husband is learning that it’s what I have to do now to survive the craziness & manage the pain. It is a process that everyone in a relationship has to go thru when they battle health issues, whether it is FMS or anything else. What makes it harder with fibro is the fact that there is still no real cure plus there are still a lot of unbelieving doctors out there. A lot of people still believe it is a “made up in your head” thing; they can think what they want. What matters to me is that I have a good medical team that believes in fibro and believes in me. Of course it goes without saying that it matters a great deal to me to have my husband on my side, too. I know this is so hard for you & your husband. He might consider what if his own health were to suddenly worsen & how much he would need your support. Illness is very hard on a marriage; I know this because my previous husband died from lung cancer. Have you considered some kind of counseling that you could attend together? It might really strengthen the love that you have for each other. A good counselor that knows how long term & serious illness can effect a couple might really be of help to you. Praying that you find the answer you need soon.
HUGS from Deb
hi april. I see some long , nice posts but i will make mine brief. I have a severe case of chronic fatigue immune dysfunction wirh all its perks-- fm, seizures, aphasia., migrains with auras, vertigo, gastric issues and unfrtunately the list goes on.I am with my husband for about 29 years and it all pretty much had started to begin at the very start of our relationship. I would say that we had a brief 'honey moon ' phase and then my health took a horrendous slide down hill and i was totally bedridden for the first ten years. We are still together but definitely our relationship has been strained. One of the things that helped us is self help education,. strong spirituality. We have also taken a course by jose silva that deals with the use of the mind. tapping into parts of the brain that deal with the patterns that have been created and changing them through meditaion and relaxation techniques, using imaginary, positive affirmations and such. No I am not cured and pain free but i am no longer 100 % bedridden . I can feed myself, cook some, read, write, type and go outside some. I got a llitle side tracked with my meditations and such mental work and realize it is a daily thing to maintain and keep on the healing trrack. My husband does these things as well and i know when he sees me doing things to help myself it makes him feel better. He has gotten very down and he suffers from mild depression so this long term illness has really taken a huge toll on him. I do have a lot of anxiety but i dont suffer with derpression.. Everyone is affected by illness so the whole family is involved and each member has to deal with it in thier own way and together. all the best..
HUGGGGGGGGGGGGGGGGGGGGGGGGGGGGS
suzie
ps i thought i was going to be brief. lol guess not...heheheh
I so can relate! I went from a person with ADHD to a person who could barely get out of bed due to chronic fatigue;(. I honestly did not think I my marriage was going to make it. I actually had an appointment with my lawyer at one point. My husband would get so mean to me. He was so hurtful. I’m hard enough on myself & harbor enough guilt without him adding to it. I do believe if I had a financial way to support myself I also would have made more of an effort to leave. Thank God my husband has has tried to figure things out & work with me. He still gets upset, & says stupid stuff, but I also had a break through with seeing why he would sometimes act like a jerk. In his weird way he was trying to motivate me, yes, it was wrong, but that’s what he was doing. He’s gets so scared when I’m down for a few days he starts to panic & gets worried, so instead of saying that. He starts to push me in the incorrect way. If I’m up & moving he does not have to admit I’m sick. It’s been really hard for him to admit I’m as sick as I am. Now when he’s a jerk I try to remember he’s scared, I don’t dismiss it, but I rem why he’s acting out.
Hi April. I’ll try to keep this as brief as possible. I was diagnosed with fibromyalgia in 2010. At first I felt quite misunderstood & let some of the things I heard from “FM uneducated” friends & family get next to me. My husband gave me the wonderful gift of doing lots of research online, etc. I know you can’t make your husband do the same but you can surely encourage him to do it. There is also a great thing for him to read titled “Letter to Normals” on the internet. If I can find it, I will post it to you. When my teenage daughter read it her whole perception of FM changed & she had a new understanding.
I hope that this is of some help.
Prayers & gentle hugs to you.
I went through this..I introduced him to this site. we also started counciling. after 28 yrs we needed it lol
He read a lot of this site and realized I wasn't full of it.