... understand it. Can anyone help to understand this condition better so I can be more supportive of her and what she is going through? I feel useless because I can't "fix" this and that bothers me. I'm begging for anyone to reach out to me to tell me what I can do to help her and to help me. Thank you very much. BTW, are there any support groups for the families of fibro patients? I realize that is a stupid question, but I need to know where I can go because I'm at my whits end. God bless you all and thanks again. Robin
Hi Ladyp - I've had fibro for 14 yrs., when very few dr's knew AnyThing about it & most of them called us hypochondriacs! So, the only way I could find out anything about it was to read everything I could find on it. I read a couple of books and found LoTs of stuff on the internet about it.
I'm not sure what would be the best thing for your partner, as far as "help" would be, you know what I mean? But, in my case, if I had just a little help around the house, like laundry, groc. shopping or cleaning the house, etc., stuff like that was sooo much help to me. The "less" stress one has, the less they'll hurt (at least that's my case).
I think finding a support group in your area would be great for you both, & it's NOT a stupid question at all!! You might even want to start your own. There's also support groups online. My favorite is www.fibrotalk.com, which also has forums for the family/spouse/caregiver. Also, check out www.fmaware.org (fibromyalgia association). My experience with fibro... there aren't any "stupid" questions, believe me!!!
Good luck to y'all Ladypiglet
I have had fibro for years but was never diagnosed till last year. Yes its hard to understand. My family would call me lazy because i was always on the couch they never understood how exhaustted i was. lyrica did not work for me but that's an option, savella is new on the market and so is a medicine called xyrem, muscle relaxers can also help. Try to be understanding and supportive but if you are able to get her out and about its good for her look on line for support groups, i dont belong to one so i cant heelp you there. Also it might not be a bad idea for her to have a sleep study many people with fibro have an alpha sleep disorder, including me, and basically they are not really fully sleeping, this on its own can make people cranky, tired and in pain. good luck
Let me start by saying I have Lupus, RA, and degenerative disc disease in addition to Fibro (I have had 9 various surgeries trying to make everything work), so sometimes I am not sure where the pain is coming from.
Getting a good nights sleep is something "normal" people take for granted. It is during this time our body tries to heal itself. Most people with fibro don't get this and it adds to the general pain, depression, despair, etc. I have found for me that light exercise helps me. When I first heard that I thought geez I am in enough pain already, but truly it does help. I am not a video game player, but a person at my drs. office suggested a Wii Fit. I rented it from Blockbuster for 5 days and then bought it. It has truly helped.
I think it is fantastic that you love your partner so much you are willing to try to do what is in her best interest. Kudos to you!! I have a wonderfully supportive husband that makes my life easier by doing most of the chores around the house. I know a lot of people in my support group need this type of assistance and don't get it. I believe that this leads to more depression. Good luck to you and yours. Hopefully her doctors will find the right 'cocktail' for her and her pain will be well managed.
Sorry I got so long winded.
This isnt stupid, i luv it. My husband is very much like you, some days he is sympathtic n some days he could careless, it just what i feel though, he too hates to see me sitting around crying, so he will as i tell him for me when im upset, when i have a great day, im an over doer hes right behind me with lifting n i like my garden but he wont let me work like i want, i know that later i will feel crappy and its my choice, but then he has to see me again in alot of pain. I say. Let your partner be the adult they are to be , if my man would id feel alot better about me, its not like my life is going to be 100% ever, and if i have a day i can go in my yard and be the person i want to be , then let me cause im usually like today blowing up my computer in one spot so i wont hurt. If you leave yourself available and let the person know to go to them if they need to talk, then it makes what we have feel that much better.
Its those who say we arnt sick or we r making things in our head that hurt us, Its not the caring one. and so be the person she never has. And ask her what she wants from you as a partner and as a friend. Its so much sweeter when we can get this..I hope this helps, its the ones who dont understand what is real that we cant handle. as you know many people dont feel we have an illness, however im thinking some day at some point we all have this even in the form of the comon flu... Have a wonderful life with ur partner...
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