Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
This is going to be long, but I'm hoping to get some help in here.
My now 17 year old daughter has been diagnosed with Fibromyalgia. I've suspected it for a while as my mother also has this. I also believe she has Chronic Fatigue Syndrome, but that has yet to be diagnosed. I'm going to give a quick rundown of the problems she has had - I would love to hear from anyone that might have insight or knowledge to help us.
Several years ago when my daughter was about 8 or 9, she started having chronic pain in her abdomen. We went to her doctor, who couldn't find anything wrong and referred us to a gastroenterologist. He thought she had IBS, but treatments he suggested/prescribed didn't work. He had her scoped from both ends and looked at her insides. Had sonograms and ultrasounds done but found nothing. We basically were told that there's nothing wrong, she's making it up. However, my daughter continued to complain of pain and nothing really seemed to help. We continued to seek help from other doctors but none could find anything wrong. One doctor removed her appendix as that might have been the problem, and did some exploratory surgery to look around and could find nothing wrong. We were left with nothing but "maybe she'll outgrow it".
My ex-husband thought she was faking it, but I didn't agree and still don't. While I know she would use it as an excuse on occasion, she also missed too many things that she really wanted to do because she was hurting. My ex became a different person and started to become emotionally abusive toward our daughter, so when she was 12, we left and I got divorced. During this time, my daughter became depressed and started having anxiety attacks. Not because of the divorce, she was relieved to be away from him, but because of her symptoms. Doctors started her on anti-depressants and anti-anxiety meds, both of which have changed over time. She also started having issues with sleep and to this day cannot sleep like a normal person. She was prescribed numerous sleep medications over the years - the one she keeps going back to is Ambien. She still takes that one, and it only sometimes helps. She wakes up just as tired as if she didn't sleep. It seems like she's in pain all the time and I just feel so helpless that I can't do anything about it!
She really had difficulty attending school - I had to get special doctor notes to excuse her excessive absences. She began having anxiety attacks at school and finally in her sophmore year just couldn't handle attending anymore. We tried the online school, but with her crazy sleep schedule she couldn't do that either as it's required for the student to be online and "attend" a class every day. Her plan is to get her GED once she turns 18, which is only a few months away.
She barely leaves the house, other than for doctor appointments. She has panic attacks in crowded places. She has heart palpitations sometimes. She's exhausted and in pain most of the time. I really don't see her being able to hold down a job at this point. I'm thinking I should try to see if I can get her on SSI when she turns 18. I know that's going to be an uphill battle, but I don't know what else to do at this point. Does anyone have any advice for me? I'm really at a loss here.
My now 17 year old daughter has been diagnosed with Fibromyalgia. I've suspected it for a while as my mother also has this. I also believe she has Chronic Fatigue Syndrome, but that has yet to be diagnosed. I'm going to give a quick rundown of the problems she has had - I would love to hear from anyone that might have insight or knowledge to help us.
Several years ago when my daughter was about 8 or 9, she started having chronic pain in her abdomen. We went to her doctor, who couldn't find anything wrong and referred us to a gastroenterologist. He thought she had IBS, but treatments he suggested/prescribed didn't work. He had her scoped from both ends and looked at her insides. Had sonograms and ultrasounds done but found nothing. We basically were told that there's nothing wrong, she's making it up. However, my daughter continued to complain of pain and nothing really seemed to help. We continued to seek help from other doctors but none could find anything wrong. One doctor removed her appendix as that might have been the problem, and did some exploratory surgery to look around and could find nothing wrong. We were left with nothing but "maybe she'll outgrow it".
My ex-husband thought she was faking it, but I didn't agree and still don't. While I know she would use it as an excuse on occasion, she also missed too many things that she really wanted to do because she was hurting. My ex became a different person and started to become emotionally abusive toward our daughter, so when she was 12, we left and I got divorced. During this time, my daughter became depressed and started having anxiety attacks. Not because of the divorce, she was relieved to be away from him, but because of her symptoms. Doctors started her on anti-depressants and anti-anxiety meds, both of which have changed over time. She also started having issues with sleep and to this day cannot sleep like a normal person. She was prescribed numerous sleep medications over the years - the one she keeps going back to is Ambien. She still takes that one, and it only sometimes helps. She wakes up just as tired as if she didn't sleep. It seems like she's in pain all the time and I just feel so helpless that I can't do anything about it!
She really had difficulty attending school - I had to get special doctor notes to excuse her excessive absences. She began having anxiety attacks at school and finally in her sophmore year just couldn't handle attending anymore. We tried the online school, but with her crazy sleep schedule she couldn't do that either as it's required for the student to be online and "attend" a class every day. Her plan is to get her GED once she turns 18, which is only a few months away.
She barely leaves the house, other than for doctor appointments. She has panic attacks in crowded places. She has heart palpitations sometimes. She's exhausted and in pain most of the time. I really don't see her being able to hold down a job at this point. I'm thinking I should try to see if I can get her on SSI when she turns 18. I know that's going to be an uphill battle, but I don't know what else to do at this point. Does anyone have any advice for me? I'm really at a loss here.
-
Good day to all.So let me explain why we're discussing this today. The problem is, if your system gets too many (as in produces too many) it's a non-Hodgkin's Lymphoma (NHL) called Waldenstrom's Macroglobulinemia, and my husband was diagnosed in early 2018.Every monocloncal antibody or protein in your blood is essentially a blank, a slug, as they call coins that have been minted but not...
-
My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
Just a bit more - she does see a psychiatrist regularly, but so far will not see a therapist. I really think she needs someone to talk to, but she doesn't see it that way and as yet I haven't had any luck convincing her otherwise.
I haven't heard about the fluoride, but I'm willing to try anything that might help. I'll see about getting that for her today, and get her some bottled water as well. We use a Brita pitcher at home but I know that doesn't get rid of fluoride. I'm also going to look into the functional medicine suggestion from Fantod. This is something I hadn't thought of before, and it sounds like someone like that might really help her.
I've looked into a sleep study, but we have a really high deductible on our insurance and I can't afford it right now. We're barely making it as it is. She doesn't want to do it, and I don't know what they would study. I guarantee that she wouldn't sleep. Without her sleep meds she could be up for 3 or 4 days at a time.
All the doctors and testing and prescription meds takes everything I have and more - we don't qualify for any assistance in that area. It's too bad that the guidelines for medical help don't take into account the cost of the ongoing care you need, they only look at your income.
I'm trying to work on her diet right now - of course she's 17 and wants to eat like any normal teenager. She likes sugar and bread - craves the carbohydrates like nothing I've ever seen. I do think having her tested for food additive allergies is a great idea, we may be able to find out something that could really help. She's a picky eater on top of everything else - she's overly sensitive to textures of things she eats. She claims any supplement she takes (vitamins, etc) make her nauseous.
Again, everyone - thank you so much for responding. I appreciate any support or suggestions that are given. I've already received several fresh ideas from this one post, and it was nice to have the support on a really down day.
I've seen over a dozen doctors, I've been on over a dozen meds, I've received useless advice from about 1,000 people. I've spent out of pocket about $100,000 on this illness over the years for doctors, prescriptions, lab tests, supplements, sleep studies, diets. That doesn't include another $100,000 on allergic reactions to meds and hospital stays. I wish I had all that money back now because nothing helped and I'm still just as sick.
I'm sorry some people here take offense to anyone offering advice when it was requested. My comment about trying to get her on disability I stand behind. If she couldn't make it to get her HS diploma then their is no way she can support herself now, that doesn't mean she will always be that way. Getting disability is hard and expensive and takes a long time so I would get started soon so you have a cushion until you find a treatment that might help improve her symptoms.
Perhaps your daughter's psychiatrist could convince her to get therapy. When one gets panic attacks, we have fear of what a therapist might make us do. I'm sure it is fear that is stopping her. I have dealt with an anxiety disorder for 29 years.
Thanks for being such a good mom to your daughter. She is so fortunate to have you.
Skinny - I'm so sorry to hear that nothing has helped. It is so frustrating that doctors can't seem to do anything or they just flat out don't believe it exists. I've run in to plenty of those myself!
It is funny you mentioned your daughter having trouble taking Vitamin Supplements. I have the exact same reaction and no one believes me!
Finally, one Dr suggested taking 1 chew able Flintstones Vitamin 2x a day. It works! I have lots of GI issues and I think a grown up vitamin is just too much for my GI system to process all at once.
Dino is the best, but I am also partial to Barney :)
I might have mis-read your 1st post and I am not sure if your 2nd post was directed at me so I'll just clarify to be on the safe side.
Your 1st post said to file for SSDI because she will never be able to support herself.
I also think applying for SSDI is appropriate, but I thought you meant that Ems' daughter would never be able to support herself ever as in the rest of her life.
Sorry for any misunderstanding, feel free to message anytime if I have upset you in anyway,
LuLu