Hi, I am completely new to this (the forum and diagnosis). I have been having Fibro symptoms for about 3 years, with the symptoms getting steadily worse. I was just diagnosed October 9th, and now I'm trying to do a lot of research and try to figure out what I need to do.
My symptoms are extreme fatigue, achiness all over my body, on and off pain in different parts of my body, numbness and tingliness, especially in my hands, not sleeping, a form of Restless Leg Syndrome (though I don't think that's what it is), ADD like symptoms, IBS symptoms.
I'm hoping I can connect with people, and recieve as well as give support. This is becoming extremely frustrating, since I have twin 13 year old girls, and an almost 3 year old girl, and all three are needy! Ha Ha! Plus just trying to do daily things, like dishes, are becoming a problem.
Hi AchyTink and welcome to the site! I am happy you are here, this is a great place with supportive people. Fibro can be tough but it doesn't have to rule your life. I was diagnosed in 1998 and thru the years I have learned to make the best of it and THRIVE. Some of the things I do are physical therapy (it is important to find one knowledgeable about Fibro if you go this route, I have a wonderful PT), water exercises during the summer (no access to a heated pool in the winter), I soak in Epsom salt baths which helps with the muscle pain, I use Salon Pas patches, and I use ice packs (a lot of people use heating pads, you just need to see what works for you). I also do a lot of deep breathing and visualization. I have a 10 year old girl and I can't imagine what 13 years old is going to be, let alone times 2. Regarding fatigue, have you checked with your doctor about vitamins? I take several vitamins and I think it helps with the fatigue. I also have a lot of issues with my hands and wrists, sometimes the ice packs help for a while. I hope you have a good doctor, it is really important to have that. Anyway, please keep us updated on how you are doing. Hugs!!!
hi and welcome to this site. I will connect with you again some other time. just wanted to say hi and send you some HUGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGS
Welcome to the site, Achy. I’m so glad that you’re here with us.it can be incredibly frustrating to manage all of this and children, but it is possible and it does get better. Stay hopeful!
3 girls that is wonderful. A good doctor is very important. Learning to pace your self if very important and for me it was very hard to learn to do. Do the girls help with chores around the house?
Welcome! I had fibro many years before I had my son and it was a challenge without children so my sympathies go out to you. Managing it all at once is challenging. I do know how difficult it can be with a three year old because they are learning to control their impulses. I was always chasing my son around for things he would grab from me. I figured out how to reign him in. We kept busy with activities that allowed me to lay down close to him or sit. We did a lot of art projects and play with blocks. When I needed a break from his energy I bought a small trampoline. You might give your twins a little money if they watch your 3 year old outdoors. I would try for brief periods (30 minutes) at first. When I was 11 my mother paid me $1.00 a day to clean up the kitchen. You can have your 3 year old help with rounding up laundry. We played basketball with the hamper. Sometimes I would just sit outside while my son rode on his scooter and threw some balls. I hope some of these suggestions help you.
Thank you so much for the suggestions and encouragement! I can already see you guys are awesome! I have a long way to go, but at least I'm starting somewhere! The first 3 days of the week kicked my butt, but I felt better today. I was actually able to do some laundry, wash dishes, and straighten up the living room! Woo Hoo!!!
Welcome to a great site full of support, and a variety of ways to manage symptoms. Wow, three young ladies, that is really a blessing. I hope you are able to get the medical help you need to get a handle on symptoms. After 2 1/2 years I finally feel that the combo of meds and lifestyle changes has brought me to a place where I can function fairly well. I still watch out for over expenditure of energy and stress levels that tend to trigger flares in me. I suffer as well from severe osteoarthritis especially in my hands, and soooooooooooo understand the frustration in not being able to do what seems like a simple chore like dishes. The great thing about teens is they are a wonderful source for help around the house, and have my teen help out a lot. It is a team after all that runs a household and you have two teens!!!! I also look for tools to help me do daily chores. I have special tools in the kitchen that help me open jars, bottles, etc. Anything that helps me do stuff without pain I am willing to try. I echo the encouragement that you have already received to get medical assistance and to keep a positive outlook. It takes time but most people do find assistance to help them in one way or another. Keep us posted in how you are progressing. Lots of hugs ST.
I just want to say welcome to the site. I personally have found sympathy, education, answers to questions I was afraid to ask, lots of HUGS, and wonderful people here. I hope you find the same.
I have OCD when it comes to cleaning. However, the pain from fibromyalgia has definitely taken over the OCD tendencies. I feel that the laundry, dishes, and chores will still be waiting for me tomorrow. If someone has a problem with it, I will gladly point them in the direction of the cleaning supplies. Your teenagers are old enough to pitch in and help you. Don’t overdo it or you will just find yourself paying for it later. Keep us posted. Hugs!
Welcome... I am newer to the site as well and can not add any more to the statements that have already been posted so just want to say that children are a blessing and hope that through this forum you can receive the support you need so that you can live the life you want by successfully manage your Fibro.
The add like symptoms are called "brain fog". I've been dealing with the pain, fatigue, and insomnia for 16 years. I don't know if it ever stops being frustrating. I've gone through times where I felt good for months and others where it hurts to even have on clothes for days. The biggest problems for me are affording the best treatments (massage, swimming, water aerobics,acupuncture etc.) and navigating the not knowing how your going to feel from day to day.
I was diagnosed with IBS at age nine and ADD at age three. No one has ever told me how any of that may have an affect on or explain my fibromyalgia.
I hope you find lots of information and people whi care and understand. I think that is also a hard part. Finding people who understand what your going thru. There are so many doubters. People who think your faking or just lazy when you can't get things done.
Thank you so much for the suggestions and encouragement! I can already see you guys are awesome! I have a long way to go, but at least I'm starting somewhere! The first 3 days of the week kicked my butt, but I felt better today. I was actually able to do some laundry, wash dishes, and straighten up the living room! Woo Hoo!!!
I know it is a tough pill to have to swallow. I went through all of that about 3 years ago. I am like you I had all these things going on with me, and went to several different doctors, and they ran tests and they always told me everything looks fine. When I finically did figure out what was going on, I was relieved, but had no idea what I was getting into.
A disease that most people and Doctors just don’t understand, and are too busy with other every day patients to really give you the full time you need.
I had to do a lot of research on my own, this forum is awesome, you will get a lot of great information from your Fibro Peers. And what works for one person, may not work for you.
I started out 3 years ago taking cymbalta after I found out, and it helped some to ease the pain, but took about a month to get used to. I also was taking Xanax at the time and still am, for the anxiety and panic attacks… Then I added on Tramadol, (a pain reliever but not a narcotic) which for me really helps a lot. But I have to take it religiously. It is a 6 hour medicine, and after about 5 hours it starts wearing off and I start feeling horrible again. I am fortunate to have a good doctor, he doesn’t know tons about the disease, but listens, and will work with me in trying different things that help me. But I have to do the research.
When I was first diagnosed, I had my 24 year old daughter living with me, and her 4 year old son, and I have another daughter that was 16. And I am a pastors wife, so I had a lot of responsibilities to take care of there as well. Since then My Daughter and Grandson have moved, and my 16 Year old is now a 19 year old college student. So I am having empty nest syndrome… Somewhat… Lol
It will take awhile for them to realize that it just isn’t all in your head. I now have a great support team in my church as well as at home. Just be patient with them, but firm, and try to get them to help you all they can. They will soon realize you just can’t do the things you could before. Try to make them understand you don’t want their pity! just their understanding and support.
Reality will soon set in with you. You will go through a process of grieving the person you used to be. You will have to come reality that that person isn’t you anymore, and you will and have to find a place where you are content with the new you.
Just pace your self, eat healthy (go low on the carbs, that will probably help the IBS), and just do a lot of research.
Hang in there, there are a lot of people here that will encourage you.
Love the name by the way! Made me think of tinkerbell on pain meds. Wonder if she'd look as bad as me right now.
Welcome to the site. I'm pretty new here but I've already become addicted to the love and support all of these good folks have to share. It's so nice to be heard. I've been dealing with this for about 10 years and I just wanted someone (besides my friend the psych doc) to listen to me!
I hear you about the kidlet thing. I have 4. And while one is grown up and on her own (unless she needs money!) my boys are 13, 11 and 5. It's so hard to be a mom when all you want to do is sleep or scream. On top of that I teach 7th graders, so I have my hands full with people who just want my attention. But they all give good hugs!
Hopefully you will get some answers and advice here. Check out the fibro 101 discussion. I've picked up a few things there. Some of the things that work for me are heat (tub, heating blanket, spa, standing in front of the oven while it's open), gentle stretching, yoga (when I have time) and a few other things I can't think of (thanks for nothing, brain!) I've just started a vitamin regimen. The nutrition center by my house sells a combo pill specifically for fibro sufferers (maybe fibro survivors would be better.) I'll let you know if that makes any difference.
Get a good rheumatologist, find a general doc you feel you can trust and (for me, anyway) a psychiatrist is indispensable. Remember to find something to smile about every day and when you feel sad, mad or just plain crazy, talk to us.
