still learning about fibro
gwinrose - Sep 25th, 2009 10:55 PM
[ Original Post ]

I am 27 and have been having fibro symptoms since I was in High School. I had moved out of my parents at 17 and haven't had decent medical or a decent Dr until recently. Every time I tried to talk to Dr's about my pain when they asked where and I said all over, I would get this look like I was crazy or a drug seeker. I feel like I am so young and shouldn't feel like I do, EVERY DAY!! I have a great Dr now, she is very open and listens. When I brought up fibro she agreed that it explained a lot of what I go through. I am not 100% sure if she 'diagnosed' me with it, though she printed me info on it and started me on some meds. She did perscribe me cymbalta but I am the sole supporter of my family and cannot afford the copay at this time. So I tried welbutrin and that made me severely sick!! I am now taking celexia, no real side effects and I am sleeping again, YAY! I am also thinking of trying some omega 3's, msm and I already take b12. I have been experiencing a lot of pain the last few days, I work out at curves 3 days a week, though I haven't been feeling like the work outs are very good due to the amount of pain I have been in. It is hard sometimes because I have a beautiful little boy who will be 2 soon and sometimes it's hard for him to understand that he really hurts me sometimes when he is playing. Likes to think that I am a jungle gym. My husband hasn't really been the best supporter in this because he has some very misconceived notions about fibro and hasn't taken the time to read about it. That can be very hard because he will say things that really hurt because if he understood what I am going through he probably wouldn't be saying half of what he says. I am hoping this gets solved sooner than later, I need more support!! Especially since I am the one working!! He is a stay at home Dad and a very good one at that!! But sometimes just doesn't understand how much work can take out of me, and I still help with chores and taking care of our son when I am not working! UGH, so much to learn and so little time!!

Comment


 

Crayde - Sep 26th, 2009 5:31 AM

Hi Gwinrose....
I am new to all this too, so i can't really offer any advice as yet, coz i am still learning all bout this too, but i can offer TOTAL understanding. Everything that you are saying rings home to me too, i am 32 and i have 4 children, the youngest of which is 13 months, so can empathise with being treated like a jungle gym, and your right, it really does hurt sometimes. I hve only stumbled upon this site in the past couple of days, but i am already finding iot to be a wonderful resource, it is great to have a one-stop information place with the added bonus of having forums that can offer assistance and support, i think this is already becoming a home away from home, a place where others truly understand and empathise with what we are going through.


Fantod - Sep 26th, 2009 10:10 AM

Hello gwinrose and welcome to the group. It does sound like your doctor has diagnosed you with Fibromyalgia (FMS).

If you need help with paying for a prescription, go to the drug manufacturers website. Google the name of the drug and that should tell you who makes it. Drug manufacturers offer assistance to people who can not afford needed medication. Your doctor may have to fill out some paperwork but it is a relatively simple procedure. These days a lot of people need help and there is no shame in asking. I think that Cymbalta would be very helpful to you. Only certain classes of prescribed medication work for Fibromyalgia (FMS). I take Cymbalta and it works well for the widespread pain caused by FMS as well as the depression that usually accompanies it.

If you are going to take B12 you need to add some folic acid to it as well. Folic acid will help your body absorb the B12 rather than having it just pass through your system.

Sleep and rest in general is a very important part of treating FMS. Fibromyalgia interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles need deep sleep to recover from the days activities. Non restorative sleep means higher levels of muscle pain. You can sleep for twelve hours and not feel rested due to this "perk."

If you can do it, continue with some form of exercise. I know it is painful and probably exhausts you even more. If you want to switch to something else, Tai Chi and yoga are highly recommended for FMS. You could also participate in a water aerobics class for people with arthitis.

You have got to get your husband on the same page about FMS. Chronic illness is a real stressor on any relationship. He owes you the courtesy as a loving spouse to make an effort to understand. FMS is recognised by the National Arthitis Foundation and the Center for Disease Control. If you go to the National Arthitis Foundation use the "search" function to find the section on FMS.
You could order the "Fibromyalgia For Dummies" book and/or ask him to come to a doctor's appointment with you. He may be scared and is acting out rather than educating himself. The better educated that you are on the subject the more in control you will feel. You can't act as your own best advocate if you don't know the subject. Take some time to throughly read all of the information is the blue boxes on the lefthand side of this page.

I hope that my comments are helpful to you in some way. If you have further questions or concerns, we are all here to listen and help. Take care and God bless.


gwinrose - Sep 26th, 2009 5:01 PM

Thank you! I feel like I have a lot to learn, I have read most everything on this website. It has been very helpful!! Since getting pregnant I have been changing many things in my lifestyle, I was gestational diabetic. I also desire that my son is raised healthily so we try to eat more organic and whole foods rather than processed. We (my family) also have started growing our own produce. This year wasn't a complete success but it was our first year, have a better place now and next years crop will be great, at least I hope.


lilteapot - Sep 29th, 2009 10:51 PM

I was diagnosed in January, and I am still learning also, i just happened to find this forum tonight. It is nice to talk to other's who not only understand, but can relate to what we are going through. I also belong to another forum group on Daily Strength. I have learned ALOT from that site. For so long I was suffering alone. My recommendation is to read everything you can! The way I got my boyfriend and family to understand better is by having them read also. Try the website butyoudontlooksick, good info there. THere is a story on there,(or you could google it) it's The Spoon Theory. It is a story written about Lupus, but it relates quite well to Fibro. That is the story that finally got my boyfriend to really understand. I can look at him and tell him I only hve one spoon left, and he understands that means I am tired and can't go much longer.