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coping with
9 Replies
Tracieg - July 5

I don't know what to do anymore? The pain is so intense and constant and worse yet is I don't know how to make my husband understand. I know he has told me he feels helpless cause there is nothing he can do but sometimes just acting a little more caring would help. Anyone with any suggestions on trying to help him understand what I'm going through? Today is terrible I hurt all over but I'm still at work because I have no leave to use. Plus I'd still hurt if I was home but at least there I could lay down and take more useless pills. Yesterday I was hurting a lot, had to go to work and the house needed vacuuming at the least. I started to Vacuum and my husband told me to stop and he would do it. I did two rooms and when I got home from work at midnight the vaccuum was still in the livingroom where I left it for him to do the one room. I know that this type of aggrevation makes the fibro worse and I try to just let it go. Instead of helping me out with stuff, he says just leave it and sit down and rest. Well it doesn't get done then. I know I've rattled on but I need help on the understanding issue, housework issue and med issue.


drweller - July 11

please email me at [email protected] and I would love to send you some information about upper cervical care. You can also check out...


LisaCorine - July 12

My heart goes out to you, I totally understand. I am currently divorced and live with my daughter who is in university and I deal with the same issues with her that it sounds like you do with your husband. Even though I know she loves me and sees what this is doing to my life, she does the same thing to me as your husband does to you and I feel the same way about it as you do. All I can chalk it up to is human nature. People just can not understand if they don't experience it and they don't share our personal priorities. She tells me I am obsessive and the other day instead of trying to once again defend myself I told her I function better in a clean, organized environment and that was the bottom line. When she fights me on keeping our place picked up it only contributes to my poor health. I wish I had an answer but I can only say you are not alone.


ibritz - July 23

Ditto! I'm 49, believe I have had FM since I was 18. Diagnosed about 3 years ago. My husband doesn't understand. My mom is worried about me, but when I talk about it, it's just like, well it can't be from FM!! My kids care, 19 & 23, but they are young and don't really understand. I've stopped trying to not talk about it when my husband is around. I know he loves me and cares about me, but most of the time it doesn't feel that way. I finally bought a cane, and after it setting around the house 2 weeks, started using it more and more. I think that helps him. He has admitted, in counseling, that he doesn't understand pain he can't see. That was about 3 months ago. Last nght and tonight he actually prayed for my health. I think it's finally sinking in when we go somewhere that I am way behind him walking, cause I just can't keep up.

One thing I did back in February, I called my Rheumatologist and told the nurse he was coming with me and that he didn't get it. She told the doctor and the doctor said some of the things that aggravated FM. He said stress and then asked my husband, if he was a contributing factor to my stress!!!!


Lesleybird - July 29

You know if you work outside the home you need to just let your house go. We have a lady come in to vacuum and clean the toilets, sinks, floors and such every two weeks and just learn to not worry about the house being too clean. Every adult in the house needs to do their own laundry, and everyone that eats needs to help load and unload the dish washer and let the rest go. I have to work about 45 hours a week and it is really difficult taking care of others when you hurt all over. Buy food that is ready made or very easy to prepare or eat out. We pay 65 dollars every two weeks to let someone else clean and we have lowered our standards and expectations of how clean the house needs to be and it is not such a problem. Don't expect a man in your life to understand and share your pain.....guess we are lucky if they just leave us without expecting us to do the housework much. If you are like me it is most of the time when I am off that all I can do is lay around. I force myself to work when on the job but it takes all my energy and when I am off I try not to do much. I am lucky that I do not have any little children to care for. At certain times the all over pain is so bad that if I knew where the gun was I would not trust myself with it as I want to kill myself to end the pain
. I did start on Lyrica over a year ago but found that if I take it constantly it stops working after a month or two. I take it at night 150 mg. and take another 150 mg. during the day if I am having a flare up of the pain which is a lot lately. If I take it when I am in pain it takes a good 2 to 3 hours to work.
Found a doctor who gave me 10 mg. of ambien for sleep and it works really well as without it I was not sleeping much at all. It is suppose to have a low rate of dependence with long term use. I like some of the others found that Lyrica helps but made me hungry all of the time for the first year and I gained about 10 pounds over the first 6 months. After taking it for maybe a year and a half the side effect of increased appetite wore off and I went on a reasonable diet and lost the 10 pounds. The other side effect of dizziness when I bent over or backed up the care has mostly worn off after the first year of taking the med.

I am also desperate with this fibromyalgia ruining the quality of my life. My father gave me a book that I have been reading and little things I have learned about possible causes of the pain and fatigue and possible treatments. I found a new doctor that is not covered by my insurance as the managed care system does not cover non-conventional, experimental modes of treatment for fibromyalgia. From what I have been reading women's hormones that are out of balance as they age can greatly contribute to fibromyalgia pain levels as can low thyroid problems that are not seen with the conventional tests. Seems that in a lot of literature they say that either too much estrogen in relation to progesterone, or even low levels of both can greatly contribute to the pain. The managed care insurance doctors will not prescribe the medications that they used to give like primarin and prim pro for periomenapausal and menopausal hormone related issues anymore because of a slight increased cancer risk with these synthetic hormones.....even though a lot of women felt better on these the doctors don't want to get sued when the woman gets cancer so they stopped writing for these. When the took my 70 year old mother off of the primpro she felt really bad with all over pain. I found her this doctor that does the bioadentical hormone replacement for real estrogen and progresterone from a compounding pharmacy and she feels a lot better. The natural hormones are not suppose to be much of a cancer risk if done properly, but managed care doctors that I go to are not allowed to pay to mess with a compounding pharmacy and bio-identical hormone replacement even if it makes the woman feel better. I finally spent $1500 dollars out of my own pocket to go to the same doctor and he ordered some hormone pannel which we will have results of in a couple of days and he also switched me to new thyroid medication that has both the T3 and the T4 unlike the synthroid that I was on that was only T4. I had some new thyroid labs done on Friday that will be back in a day or two. This man is an OBGYN that studied under Dr. Hotze in Houston but charges less.
He is not afraid to treat the symptoms and not the lab test when it comes to thyroid and other hormone replacement. I will let you all know how it goes......I really hate this disease because conventional medicine has not found an adequate treatment and they are not even sure the cause which may be different in each individual. I will let you all know how it goes.
It feels better to know that I am not alone. Often the pain makes me really sad that I am missing out so much on life. Every now and then I feel totally normal and pain free for maybe a half a day once every month or two and it makes me really sad as the contrast between the way I normally feel is such a difference. I don't know about all of you here, but my pain is usually my ribs, my diaphram when I breath, upper back and neck, my forearms throb, my lower legs ache and I get cramps in my feet. My knee joints hurt, and walking up stairs feels like my muscles are plowing through wet concrete. I don't know if my fibromyalgia is caused by my Sjorens (can't spell it), that was diagnosed a year ago with a very high SSA antibody, or something else. I wish everyone the best. We need to find treatments that work! Lesley


kathleen Paterson - July 30

hi lesleybird i think you are right about thyroid , i am certain this is all caused by mine but my doc says the mediaction i ma on is fine, does anyone have constant presuure sensations in their head , i am starting to get them on my chest as well now really frightening?


fibrosufferer - July 30

I've had so many symptoms that I thought I was going mental. Anger is a bad but coping skills help. I use to laugh at pain clinics but now I truly understand the need. I think the more anxiety the more pain. So keep your feelings in check and it leads to less pain. I had a second cervical fusion and upon leaving the hospital I was so bad I couldn't even speak. I was almost paralyzed! I"m no doctor but I have realized having a good doctor takes away alot of the anxiety. I had doctors looking at me like I was nuts because of so many symptoms. Pressure in the head is a daily thing, I use coping skills to help. Rest, exercise and relaxation techniques help. Oh, and take the suggested treatments (vitamins etc) it does help! PRAYER HELPS! Sincerely, V


PreggowithFMS - August 10

Looks like there has been alot of great advice given on this post. I would def have to agree about the housework. What I try to do is section it up to one thing a night. Make a list of what is really stressing you out about the house and then try to do what you can. I used to stress myself out so bad about trying to keep up the super mom and superwife life even after I became really ill but I finally realized that all I am doing is making my condition worse, which made me more mad and more stressed, which made it worse - you get the picture. I am not sure if you can afford someone to come and do your deep cleaning for you but you might be able to enlist the help of a trusted person for a minimal fee to help you out.

How have things been since you last posted?

P.S. - except for the very first post from drweller - I absolutely loved all of your post and great advice!


VictoriaB - August 15

I need to vent! There are so many great responses, it's like what I feel inside. My husband has no ideal what I am going through, he thinks I am a hypochondriac! I recently went back to work full time as a staff nurse and well I am in the 7th week and can't do it. I am taking Cymbalta for the pain and Lorcet. The only thing the Cymbalta does is maybe give me a wee bit more energy but that's it. The Lorcet really helps but I feel like I need to lie down at work and well...................I can't really scoot the patient out of bed.but I guess I could climb in with the little ones. My husband hasn't been helping out at home and the cleaning girl didn't ocme last week so when I was having a huge flare he said nothing nor offered any help. He did ask me last night if I was going to quit again!!! I know it's difficult for the families and all but I feel like I am dying!! My older sister has Fibro and she is the only one that I can really talk to about it. I was recently diagnosed but I know I have had it for a while but didn't want to believe it I think!! I want a shack at the back of the farm and live with the animals, I think they would be kinder-my ribs, thighs, and hips feel like I will pop apart at any time............thanks for listening!! V


Beone - August 18

Dear Tracieg
I am male with fms, and if it was my wife in your situation I would feel helpless too.
my suggestion is to hug him deeply any time you feel like you need to communicate that help is needed, and explain to him in his ear how much you love him but you are so sore and cannot do things like you would like to do, Tell him sweetly and lovingly the same way you would feel you would like to treat yourself . I am saying this because it is your feelings he will react to not so much what you say. Kiss or hug him every time he dose something for you or the house, even if it is different to the way you would do it. he will reponed by doing more because he will feel like he is helping when you kiss or hug him. He wont understand the pain you are in but he will help more than you think if he feels he is making a difference and you love him, I know hugs can be sore but in that hug that is the time to communicate.
my love to You both Beone,



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