Fibromyalgia Symptoms HOME

Hi tiaria, I too deal with a hubby with his own emotional problems. It took me years but he finally saw a dr. and started antidepressants which has helped some.

Have you been to counselling together/has he read much on fibro.

This illness takes a village to support you.

You both need to sit and discuss what marriage means to you. Are you committed to making it work? Cause it is hard work and even harder when you add in an illness like fibro

What kind of things are you forgetting...are you writing things down. Those to do lists become lifesavers when fibrofog is present.

Also try leaving little notes for each other...with remember notes and love notes.

Good luck, I've been dealing with fibro since 2002, and depression since 1993. I know how hard it is.

reply

Little sticky notes are my life saver...and I keep them everywhere...because when I remember something it needs to be written down or it's gone just as fast as it popped into my mind. It has really helped me keep things organized.

Kaybeth gives some wonderful advice about seeing a counselor. They are very helpful. Men tend to want to solve problems themselves...however, if something was wrong with the car he couldn't fix...he'd take it to someone who could...right? This is no different.

Good luck :-)

reply

An Open Letter to All Who Do Not Have FMS

Having FMS means everything has changed, and a lot of these changes are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about FMS and its effects, and of those that think they know, many are actually mis-informed.

In the spirit of informing those who wish to understand .. These are the things that I would like you to understand about me before you judge me ..

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about my work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting the act of standing with "sitting", "walking", "thinking", "being sociable" and so on .. it applies to everything. That's what FMS does to you.

Please understand that FMS is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!" If you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes .. may frustrate me to tears, and is not correct .. if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously FMS deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS may cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). FMS does not forgive.

If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with FMS then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS, if something worked we would KNOW.

If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor. In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me the the doctor, or to the physical therapist. I need you on a different level too .. you're my link to the outside world... if you don't come to visit me then I might not get to see you. ... and, as much as it's possible, I need you to understand me.

I know that you have tried with all the medical readings and such but print out what fibrofog and make him understand. If you have the funds see a consoler that is familiar with fibro and get them to explain this to him. I hope the letter helps it has helped me explain myself to many people. Good luck and God Bless

reply

Lenzi, you said it so perfectly

reply

Do you see someone to talk about your feelings, you may want to ask him to come with you. I warned the councellor that hubby may not want to talk, but she got him to talk, next thing I knew hubby was talking and visiting. This opened up his feeling that had been bottled up.

Just remember, men are raised that they have to be invincible, that there are not to feel, are the provider, have to be breadwinner, be strong.

They tend to put their feeling on the back burner, and at one time or another, it pops up and trouble brews in the marriage.

As for you, sticky notes and a book to write your feeling in, everday if possible, hide your book and write what you need to get off your chest, this well him. The sticky notes and anything else that might help you remember.

Get him to go to your doctor's appoitment and ask doctor to explain to doctor what happening with you.

You my dear cannot save your marriage by yourself, if thing get to the point emotional bullying, or physical, then it's time to go.

You tried your best, but no one needs to deserve a life of no respect and emotional or physical abuse.

I would think that if your circumstances changed, you would be less anxious and would probably feel better.

reply

Thank you Lenzi, no one could say it better.

reply

Lenzi....your open letter said exactly what I have wanted to say for the past 6 years. Thank you

reply

My husband didn't get it either until he read a book I had. Now he tries very hard to understand and help. He has been great at doing a lot I cannot do. I feel guilty that he has picked up so much of the slack, but I can't do the things I used to on a regular basis. The book I have is "Fibromyalgia for dummies" It is great and very easy to read. Good luck hon.

reply

My husband and I just had this conversation last night. He gets frustrated with me because I forget to "call" someone, "do" something etc. I told him I feel like I am so alone in this. I have to ASK him for a massage or to understand how I'm feeling. It hurts so much. My daughter does not live at home any more and my son is still at home in college. I have to aks each of them to help me and rub my back, neck, knees, shoulders etc. My son says it's "gross" touching his mother's behind (my back pain runs down my back, though my behind and down my leg). It makes me feel like such a burden. My husband says I'm not a burden, but I can not work any more so I can't contribute to the family income, sometimes can't even get out of the bed. I am thinking about counseling. I have seen a counselor, but he was a joke.

reply

The Bonz,

Never give up on counseling.  The right counselor will come along. Some times it takes 3 or 4 to find the one that clicks with you.  I suffered from suicidal depression a few years ago and found that group counseling helped me immensly.  Having recently been diagnosed with FM (june 18th 2009 to be exact) a lot of things fell into place and the light bulb turned on. I am still devistated by the diagnosis but having experienced good counselors and counseling programs I have the tools i need to deal with the depression.  So again I say if it takes changing counselors a few time never be afraid to say " I am sorry but this just isn't working out" and ask to see someone else in the agency or go to a new agency. 

Hope this helps
Raven

reply

Hello to all... I'm a man that's dealt with neurological problems for nearly ten years. Mine are not with pain. Mine are a result of a brain lession/benign tumor. I'm here, because I'm forming a serious relationship with a woman that does have fibro. I have that "fog" everyone with fibro describes. I have short term memory/borderline dimentia and it seems to be it's worst in the mornings.

I wanted to comment because I'm learning there are lots of simlilarities we've shared together. I don't have pain but nearly all other symptoms are similar. Fog, memory problems, stress can diminish my memory and instead of pain, I'll have random seizures. Sharing our experiences has made us close.

People with neuro problems understand in ways other's don't. I lost my wife n family ten years ago due to my health. Neuro problems scare those that we love. It's the inadequacy they feel in not knowing what it is and what to do.. My neuroligist tells me that he's seen many of his clients loose their partner as a result of neuro problems. So for those of you out there with family problems because of Fibro... There's literraly millions of us going thru similar expereinces as a result of neuro problems. Your not unusual, disformed, weird or crazy. Your special... Special because you see life from a kaledescope, instead of thru monocular lenses. It fascinates me as I read, how intuitive, macro-vissioned people with fibro are.

I rely on my spiritual side to direct me with relational matters by being open, honest and find ways not just for them to understand me... But for I to understand their fear. It drives those we love crazy to not understand what's going on. So they guess, suggest and imply what they know. Independency is an attitude that does not have to include cutting those we love short of all our truths. It's important for them to know all of it... Especially those aspects that are humiliating! In my new relationship with a woman of Fibro... I'm realizing that the daily, chronic symptoms can lead one to assumptions for both of us. I'm doing my best to remind her that I need to know her circumstances and in return I'm keeping her aware of my condition. I'm not looking for her pity, nor am I wanting to pity her... I Just want to love her n give what I can. So I have to remind her... Tell me, Tell me... Oh please tell me what's going on as it happens.

reply

prior to being diagnosed with FMS my family and friends thought i was lazy and a flake. Since my diagnosis I have been lucky. My husband became a man I had not seen in years. He is my support whether its helping keep the house or just holding me when i hurt. I thank the heavens for the friends I have. When I told them my diagnosis and pointed them to this website they all read up. I have had to bite my tongue when they suggest a treatment because even though it gets old I know they are only doing it because they love me. they are slowing me down and even helping me around the house I never allowed them into before. I pray that all who read this can say they have a great support network.

Thanks so much everyone, for being here for me too. Its helping me not whine at them :)

Shout it out!
Raven

reply

Hi tiaria,
Please keep in mind that the person that is diagnosed with FM needs time to deal with their sickness and this is why the Memory Loss or FIBROFOG comes about. I walk around the house trying to remember what I was doing. I have FM and I have had problems with my children, family and husband. I just need time to sort out your sickness and if they do not understand they will come around if they love you.

reply