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My husband thinks I make it up.
38 Replies
linda brown - October 8

yes, and all i can say is tell him that he don' t get it because he don't got it honey. and anyway, after he sees you going through what we do, he'll know that this is for real. but make copies of the things you;ve read and have him go to the doc with you. my husband does and he finally believes in this and can explain it to others. hang in there

 

Susan C. - November 11

Fibromyalgia is sort of like alcoholism in that it doesn't just affect the person who has it but the entire family, especially one's spouse. At least that has been my experience. Sometimes my husband is very sympathetic and at other times he seems really mean. I believe that's due to his feelings of frustration in not being able to help more. But I'll never forget something he said to me not long ago. He said that he doesn't have a life anymore, that his life is ruined because he's married to a cripple. Everytime I think of that, I just want to cry.

 

paintt - May 23

Hi there, Im so glad that there is a stite like this.. I have been in major painf or the last year and a half..my husband thinks im full of it.. he keeps saing that he wishes I was the same as I was 5 years ago! It makes me upset because I am a very active person I have a major Horse breeding ranch that I built up on my own and raise 2 kids and of corse him...
And in the past year months its been "heck" I have to get rid of all or most of my horses because I just cant do the work anymore. there are times I cant get out of bed in the morning.. he wakes me up at 7am every morning to get the kids (13 & 14) and him fed in the morning and get there lunches ready for school.. while he sits at the TV and watches the weather or music channel.. while I drag my self into the kitchen and try to get everything going... I can barly move in so much pain (REALLY BAD) and still have to get it all done.. I take Morphine extended 2 pills in the morning and 2 at lunch and 2 at supper.. while taking 6 Morphin Statics during the day.. sometimes with the other 2.. BUT its still bad... it takes till 10:30 am to be able to function.. just to move...
And If I have to drive somewhere ..... well thers a hole different ball of wax.. thats impossable ..

And my husband told me tonight that he hates me and he wanted things to be like it was.. WELL SO DO I!
he thinks of himself as why I cant go with him places long drives, why I complane so much ect.. you all know it...
I even thought of "Ending" my pain because Im loosing everything.. my SELF WORTH...BUT He doesnt see it.. he thinkis im making this all up..
I really need you guys to chat too.. as Im looking at the devorce thing or "Ending" my pain..
thanks for listing too me...
sorry for rambling
Karen

 

Fantod - May 25

Karen - I'm terribly sorry to read about your situation. I can relate to your story to some degree having endured a husband who refused to accept my health situation as well. We are now divorced.

I'm going to give you a crash course on Fibromyalgia (FMS) in addition to commenting on what is going on in your home life. I hope that some of my comments are helpful to you.

I'd like to gently suggest that you consider seeing a counselor for extra support. Many of us, me included see someone and find it extremely helpful. You should try and find someone who has experience in treating chronic illness patients. This can be accomplished by calling your local hospital physician referral service.

FMS is a disorder of the central nervous system that causes widespread, chronic pain. It is correctly referred to as a syndrome. The mechanism that causes it is not understood. There is no cure but it can be managed with certain classes of prescribed medication. FMS is recognized by the National Arthritis Foundation and the Centers for Disease Control and the World Health Organization.

This website has some of the most comprehensive information about FMS on the Internet. Take some time to read through all of the information contained in the blue boxes on the left-hand side of the website page. There is excellent concise information on FMS and the many "perks" that can be associated with it. The “perks” include Restless Leg Syndrome, Raynauds, GERD and a host of other conditions. You should also read through the posts to learn about what other people experience and how they deal with it. I think that the key is to become educated as possible about FMS. Knowledge is power.

Have you considered asking your husband about going to counseling together? I'm not optimisitc about that suggestion based upon your description but I wanted to ask anyway. If you don't want to share this website with your husband, family and friends, there are a couple of other options. Go to the National Arthritis Foundation and use the "search" function to find the information on FMS. Send the link to friends and family. Go online to Amazon and purchase "Fibromyalgia for Dummies." It will have good basic information like any of the other books in the Dummies series. Read it yourself and pass it around.

It is very common for people with FMS to have friends and family who refuse to accept the limitations placed on a person who has this syndrome. Pain is subjective. For some people, if they can not see it, the problem must not exist. In my case, my ex husband insisted that I was still able to work in some capacity. I have medical records from any army of specialists to indicate otherwise. He was adamant right up until the bitter end that I must be overstating my discomfort etc. You are going to have to learn to ask for help, stand your ground, say 'No" and mean it and not feel guilty about it. And, most importantly, be grateful for everything that you can do as opposed to dwelling on the losses.

If your husband is not agreeable to counseling than I would suggest that you find an attorney and discuss your options as soon as possible. In the interim, I'd make copies of any financial records and tax returns that you have access to at the moment. These things have a habit of being "misplaced" when things get testy. I fully realize that this is not the message you want to hear. I'm speaking from practical experience. I had a h*ll of a time during the divorce proceedings. I was pulled out of arbitration due to exhaustion. Make sure that all of your doctors are aware of what is going on and that it is documented in your medical file. If your symptoms become worse, make sure that you tell them that too. Your attorny will be requesting copies of all of your medical records. The more ammunition they have to work with, the better. The better organized you are up front will make the process go more smoothly (if there is such a thing).

A rheumatologist is the doctor best suited to help you manage your symptoms. There are now three prescribed medications to treat the pain of FMS. You have probably seen the ads on TV for Lyrica. The most common complaint about Lyrica seems to be rapid weight gain. Unfortunately, many rheumatologists are not proactive about changing medication when this problem becomes apparent. The second option is Cymbalata which is an antidepressant. Cymbalata addresses both the pain and depression that usually accompanies FMS. I use that myself and have had good results. The newest medication has been used in Europe for decades. Savella was approved for use in the USA by the FDA last year. Many people seem to have good results with it. It takes time and a lot of tinkering to find the right dosage and medications to make you feel more comfortable. You might want to consider finding a pain specialist with an interest in FMS. I have a rheumatologist and a pain specialist. You can call your local hospital physician referral service and see if they can recommend someone.

Have you been tested for a vitamin D deficiency? This is done with a simple blood test. Many people with FMS are deficient in vitamin D. I'd also like to suggest that you be tested for gluten sensitivity. The most accurate result is obtained using a stool sample. It is entirely possible to be gluten sensitive without having Celiac Disease. Either of these issues can also cause widespread pain.

One of the reasons you are so sore and tired is a lack of restorative sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles need deep sleep in order to repair themselves from the day’s activities. No deep sleep means higher levels of pain which rapidly becomes a vicious circle. Restoring some level of deep sleep is a crucial part of treating FMS. You should be on a sleep aid like Amitriptyline to help with this issue.

Some people with FMS are very sensitive to touch. This is called “Allydonia.” Pressure from clothing, bra straps, watchbands and anything that touches the skin may be uncomfortable. There is no solution to this issue other than to find clothing that feels comfortable. I have Allydonia but some days I am less sensitive and can wear whatever I want. Other days, I stand in my closet wishing that my nightdress was appropriate day wear out in public.

With regards to diet, if you use anything containing an artificial sweetener, get rid of it. That also includes Splenda. If you require a sweetener, use something made from the nontoxic Stevia plant like Truvia or Sun Crystals which can be found right alongside the other sweetners in any decent grocery store. Avoid deep fried food, lunchmeat and wine (nitrates) as they will probably increase your pain level too.

The key to living with FMS is learning to pace yourself. If you overdo anything, the payback can take days or even weeks to get over. You can still do many of the same things but you have to think outside the box. Break tasks down into more manageable increments. Get plenty of rest, watch your diet and eat high protein to prevent huge energy swings. If I have an event that I want to attend, I "save up" energy by reducing other activities. Even then, I may have to curtail my participation. But, in my estimation, something is better than nothing.

And finally, the National Fibromyalgia Association has a list of fibro-friendly doctors available for quite a few states. Not all rheumatologists are created equal. If you feel that your current doctor is not addressing your needs, than get a second opinion. Be sure to take a copy of your medical record and current tests with you to save time and money.

Karen, I wish you some peace in your life. Please let us know how you are doing and if we can help in any way. You are not alone. Take care and God Bless.

 

paintt - May 27

Oh my thank you so very much! you have a great insite to all this... I did call my doctor and set up an apt to see him, I went today.. sadly he upped my morphine 3 times of what I was taking.. not much really because I was doubling up anyway on them.. but non the less I walked in there in pain as I ran out of my pills yesterday and the only time I got in was today... so after sitting for 1 hour 45min in the doctors waiting room (you can imagin how I felt) while searching for something in my purse and found 1 tylenol lol so i took that.. better than nothing lol
well when I finally got in, he could see i was in pain and after his perscription, he suggest me to see a pain clinic in the city (im 3 hours away) but that was great... he mentioned possable shots in my back and hips??? hummmm but he said just check it out.. non the less I had nothing to loose... so Im waiting on that.

Funny after taking the upped morphine pills tonight, kinda took the edge off.. the doct said he didnt want to prescribe any higher so the pain clinic is my next step...im ok with that...but I have done no phisical work for a few days because of the pain... so I guess ill see how i am tomorow when I crawl out of bed...

funny i do take sweetners...its the yellow pack "sugar twin"
oh the clothing thing... funny with that too.. I can LIVE in my jammies lol I hate wearing a bra and uncomfortable genes around the house.. when I come home from town I strip to my jammies or sweat pants and a baggy ole shirt... Not very attactive but I hate clothes tight on me..I feel like it hurts... i did not know that was part of it..

Yes I printed out a handfull of coments that people wrote out so he/hubby would read them.. and I told him i found you guys and it was amazing how it wasnt just me!

not sure how it will work in our relationship... but he bugs me for sex all the time... I hate him for asking or implying because I hurt...I can barely walk never mind that.. we sleep in 2 different beds.. for over 5 years just because he snores and my back hurts so much i toss aLL THE TIME so i put a bed in my computer room... But he bugs and bugs.. the more he asks the more i hate him.. I dont know why? I guess its like why should you be happy and im in pain.. and you just dont understand...how im feeling .. one night i gave in because I was tired of arguing and I cryed the hole time... I hurt from my pains.. he didnt even seem to care.. that bugged me!!!

But non the less before I ramble on... Ill see how I feel in the morning and I have to clean my horse barn 1 stall only tomorow..im pacing my self only 4 more after... Its sucks that I have to pace a job that normaly takes 3 hourse to do takes me a week or more now.... I just hate it!
Chat soon my friend.. nice to hear your imputs
Karen

 

Fantod - May 27

Hi Karen - I was beginning to get worried when I did not see a response. I'd really like to encourage you to see the pain specialist. I have one who works in tandem with my rheumotologist. He had some insight into my situation which everyone else had missed. It was a simple solution that really helped.

Also, the injections your doctor is talking about are for tigger points in your back. Trigger points are muscles that are contracted and won't let go by themselves. They feel like knots under your skin. The injections release them and break the pain cycle. Honestly, the injections are not fun but the end result is worth it. I had 12 injections in my lower back. The injections worked and since then, I have only had an ocassional issue in that area. If you decide to try this, have someone go with you to do the driving. And, take an ice pack for the trip home. It will probably take a few days to get over the injections so plan your schedule accordingly. I hope that you will consider this as I think it may really help.

Do you take any other medication other than morphine? Are you taking an aid for sleep? Have you already tried any other of the medications currently used for FMS?

Your husband is another issue entirely. I want to encourage you to go to counseling even if he won't attend. That is not the type of treatment that you need or deserve in your life.

And finally, get rid of the artifical sweetner you are using. It is not helping your health situation at all. You should be able to find Truvia or Sun Crystals at your grocery store.

Karen - as you know, dealing with FMS is very difficult on a day to day basis. It is a very lonely illness which requires that we all act as our own advocate to get the type of medical care that we need. Please scrape together the energy to get yourself into the pain clinic and to see a counselor so that your life will improve. Take care and keep in touch.

 

jrzgirl1 - May 29

I can join that club, I really wonder if he will be able to deal with me in the long term. he will NOT read anything about it or will he go to any appointments with me, he seems to be sick and tires of me

 

paintt - May 31

Thanks a bunch... I will see the pain clinic.. I think its the way to go.. no im just taking the morphine..nothing for sleep..

jrzgirl1---- Totaly understand.. I dont know why husbands are like that.. god forbid if they hurt them selves there big Flippin babys... and want to be catered too.. But we still have a family to run, some of us have outside jobs.. and even the ones that stay home like me, I have a large horse farm I was raising and breeding 24 horses yearly, breaking them to ride train ect.. LOTS of work. now I have downsized because of this not just the big horses but I got into Mini horses.. I still love horses but the smaller ones cant hurt you as much lol
so now I have 8 horses(bigs) left going for only 5 so thats good...

Husbands dont understand thats why im so glad that I found this site.. just me talking with some one really helps even if its over the internet.. I dont feel alone anymore..I thought maybe it was me.. I was loosing my mind... but I realize im not..
Thanks for help (Fantod) you made a difference...

and Jzgirl1 there is someone here to listen....
Take care
Karen

 

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