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.
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We're all troubled.WSo, to remind ourselves we're not at rock bottom (this is a reverse optimism thing I learned as a kid):We are not living on the island of Krakatoa when the volcano goes boom!Yeah, okay, that sucks.***Toay in 1942, Pierre Laval announced that the way to free France was for Germany to win WW2. Pierre did not win a lot of friends. When the war ended, quite quickly he was tried...
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Another day, another ouchie?My bruised achilles tendon (don't ask) makes my foot numb. Wonky on meds, whacked it.Now, as to fibro:A lot of reports are going around some parts of social media that fibro (and dang near anything else) are caused by post-Covid, post-flu, post-vaccinations, post-pick-something.1. Your risk of death or serious complications beyond "ow, that shot hurt!" are typically...
Please read the article I posted today and my response today to someone who was recently diagnosed. I am very, very sorry about your daughter's diagnosis, but the diagnosis has a silver lining because now you can proceed with treatment options. There are a lot of meds out there. The first choice for fibro are Cymbalta, Savella, and Lyrica. See the article.
Also, I imagine that you have been told that she is not gluten intolerant. I was told the same thing. But I strongly recommend that she try an elimination diet. Many of us are super sensitive to foods/additives. Simply changing the diet will not make her well, but to me it makes the difference between level 3 or 4 of pain and no pain. So, it's that last 30% that meds will not get.
My best wishes. Yout have found a really good place. We have our individual approaches. I am all about "Yes, you can do it! Ra,ra,ra!" Others are warm and empathetic. whatever, we all care.
I agree with Emily about the SSI. It may take some time to find something she can do, but it's worth trying. It helps so much to focus on what you can do instead of what you can't. I've lost count of how many jobs I couldn't keep, but I like to make things and I eventually made a job of that. I don't know, just throwing ideas out. Hopefully she can find something.
About ten years ago, I went through a very stressful time at my job. I started having horrible stomach pains. The dr. did ultrasounds and such and never found anything so they, too, referred me to a gastroenterologist. He then told me that the fibro was telling me that I was too stressed. He didn't give me anything and I don't remember what his advice was but it went away and I really haven't had a problem since. I know this probably won't help much but I did want to let you know that I went through stomach pains as well but they didn't last for long.
It does sound like she has CFS as well. I'm with Emily too. I have both fibro and CFS. I am doing a gluten free diet and it seems to help the fatigue. I'm not sure about whether it will help the fibro; I don't have a lot of pain. But it might help your daughter if she tries it.
I hope you find something that works!
Welcome to the group.
First, let me say that I wish my mother was half the advocate for me that you are for your Daughter! You are a fierce woman-you are so right that kids don't fake sickness and miss things they like, and it took much courage to leave your husband and start a new life for you and your daughter. All I can say is way to go! Your daughter is lucky to have such a good role model.
I feel for your daughter- to not be able to attend high school and participate in activities, sports, dances, dating, senior year, etc,,,She just can't possibly feel well.
I was around the same age (but for different reasons) when I started having debilitating "I think I am dying" panic attacks. I did my grocery shopping at a 24 hour convenience store to avoid crowds. I was very isolated.
My suggestions,.,well you know your daughter best, and have been doing a great job.
I think what concerns me is that she is very young to become housebound due to panic. I might start by getting her set up with a good therapist she feels comfortable with to tackle that issue.
As for SSDI, I respectfully disagree with the other posters.
I see no problem in applying for SSDI with your daughter as long as you and she continue to search for a Doctor who takes your Daughter's problems seriously and is willing to work with her or refer her to a specialist at a better hospital. And, SSDI will only be a useful tool, if your Daughter works with a therapist she is comfortable with to help with the panic issues.
Again, I respectfully disagree that it sends a negative message to your daughter. As your daughter's physical and mental health improves, even on SSDI, your daughter can work and earn up to $900 per month without losing any benefits. SSDI will allow her to make baby steps into the world instead of having to dive head first.
Also, SSDI does not have to be a life long solution. People do improve, they get healthy, they come off SSDI. Your daughter is young, and she has potential. Taking care of her immediate needs via SSDI does not mean she will never have a job, never go to college, never leave the house. All it means is right now your Daughter is seriously ill, and it seems that you all have just not found the right treatment team yet.
As your daughter progresses over time, you will be there to encourage her to do things in the world...volunteer at an animal shelter? Be a Big Sister? Dunno, whatever she is interested in and is non threatening, but these are the small steps she WILL take in time as she improves, and they are wonderful steps.
Be proud of your daughter for who she is right now in this very moment. She is a strong young woman, not unlike her mother. She is surviving, pain, illness, and excruciating panic attacks. That is a lot for a teenager.
You are thinking of her future, and she is not a failure if she needs assistance for the time being.
Best, LuLu
There are no breakthroughs despite what you may hear. They don't even know the cause yet and so they certainly are not close to a cure.
This is a life-long illness that does not discriminate with age, race, or gender.
It makes me so mad when I read about children or anyone with this horrid condition not being believed when they tell you they are hurting.
Dr. Bell is the only pediatric physician that I know of that treats FM and CFS. You might find some helpful information on his website. He is in Lyndonville. The CFIDS Association also has pediatric info on their site.
Unfortunately there is no one treatment fits all. Everyone is different in the medications that they will tolerate. All that can be done is treat the symptoms and try to make her more comfortable.
Just don't fall for the scams that can "cure" her. There are tons of cons out there waiting to take your money. If someone says they are cured then I don't believe they really had Fibro. There is no cure at this time.
If she is about to be 18 please help her get on disability, she will never be able to go out and support herself.
My heart goes out to you. I have been suffering for 15 yrs.
http://phoenixrising.me/
I do agree with getting her set up with a good therapist to help her work on her anxiety. Don't be afraid to try out several until you find one she trusts to work with her.
Kudos for being a great advocate. We could all use someone in our corner.
I'm thinking that a lot of the panic comes from the realisation that she cannot count on her won body at this point. Most of us go through that at some point. It might be helpful to explain to her that's where a lot of the panic is coming from. That way at least least she won't question her sanity as well.
You might encourage her to try some deep breathing and relaxation techniques I would also be positive about finding a good doc who will know how to ease some of her symptoms.
Sending some good thoughts your way.
Hugs to both of you.
You have made some excellent and realistic observations
I do just disagree with the statement that this young woman will never be able to go out on her own and support herself.
With the support of Em, a good therapist, and a good GI, this young person, just like everyone else on the planet, has unlimited potential, even if it is within the limits of an illness or disability.
Quality of life is subjective, and life has no limits if you're not afraid to jump in it :)
First off you can give up on doctors right now. If you're going to go that route be ready to spend thousands and thousands of dollars on chasing dead ends. I've seen a couple of dozens doctors in my life and they were all a waste of my time. If I'd listened to 10% of the terrible advice I was given I'd imagine I'd of done plenty of stupid shit like having my appendix taken out too, no offense.
I haven't cured fibromyalgia but I'm miles from not being able to talk or function at all like I used to be. My recovery was gradual as a result of switching to an all organic diet, not eating canned vegetables or seed/vegetable oils, taking nutritional supplements such as spirulina/chlorella.
also stop showering, drinking, or cooking with tap water. Fluoride ingestation from tapwater is considered a leading cause of fibromyalgia by many researchers. You should get an reverse osmosis filtration system for you're cooking and drinking as soon as possible, they're only a couple of hundred dollars now.
i have another post here where i explain this somewhat better, its much more than this but its too much to type here.
It sounds like you have done a lot of research and also founds some really interesting ways to deal with Fibro. I knew a bit about Fluoride-don't have in my toothpaste, don't drink tap water, but I never knew I could get a filter for the shower- very cool.
I just have to say that telling a single mother who is clearly trying her best to do right by her daughter, that following her Dr's advice and getting her daughter's Appendix taken out was 'Stupid Shit' was cruel
It served no purpose and there are so many other ways you could have said that so all of could have learned something.
It did not help EmsMom in anyway and provided no constructive advice.
What it probably did do is make an overwhelmed mother who is doing everything in her power to take care of her kid feel lousy.
Way to Go. (No Offense)
LuLu
I think that you should consider taking her to a functional medicine or integrative medicine specialist. This is an MD with a strong interest in holistic medicine. Many of them take insurance. I have used both conventional and functional medicine to deal with my health issues. I actually got more constructive help from functional medicine when I was first trying to sort out all of my problems.
Here is an example of what they figured out. When I was first diagnosed with Fibromyalgia (FMS) I had severe/crippling pain in both legs. Everyone else was blaming it on degenerative disc disease even though my MRI did not support this theory. The functional medicine doctor had me complete a specific blood panel for allergies. It turned out that among other things (and I had been tested for allergies before) that I was allergic to green food colouring. That colouring was in the shaving gel I used every day hence the pain in my legs. No more gel = a lot less pain. The green food colouring in the gel was triggering my immune system.
It is not uncommon for people with FMS to have multiple chemical sensitivities. I can not take a lot of prescription and OTC medication. And, that same test also revealed that I am sensitive to an additive used to keep baked goods fresh. Her stomach problems may a result of a very specific sensitivity to something in food.
I'd also suggest that a sleep study be done to see exactly what is going on. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles require deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain. It is not necessary to leave home for a sleep study. A technician can come to your home.
A good therapist is needed to help her deal with the panic attacks and being chronically ill. Usually the type of therapy recommended for this situation is "Cognitive Behavioral Therapy" or "CBT." You can call your local hospital and ask for the physician referral service and see if they can match you up with someone. Or use Google - just enter the name of your metro area and CBT and see what pops up. This is a particularly important issue that needs immediate attention so that she doesn't become totally housebound.
The three primary medications that are used to treat FMS are Cymbalta, Savella and Lyrica. When starting a new medication, don't expect instant results. It takes time and a lot of tinkering to find the right combination of medication and dosage for each FMS patient. And, don't expect instant results. It can take several weeks to notice a change in symptoms. The longer a chronic pain cycle continues, the harder it becomes to manage or stop.
Diet is important. If your daughter uses anything containing an artificial sweetner, get rid of it. Many people with FMS are highly sensitive to sweetners. It makes our pain levels go up. If a sweetner is needed, use something made with the nontoxic Stevia plant. You can find Stevia based sweetners in the baking aisle right alongside the other stuff. Deep fried foods, lunchmeat and anything else containing nitrates can be problematic as well.
Respectfully, I agree with Lulu on the issue of SSDI. Your daughter deserves to have something that she can call her own at this point in her life. It doesn't have to be permanent if you are able to get her health issues to a better place. Depending on circumstances, she can either work part time and earn up to $900 a month or stop SSDI altogether. As long as you are working towards a better solution for her health problems, apply.
I'd like to suggest that you purchase a book called "Fibromyalgia for Dummies." Like all of the dummies series, it contains easy to understand information. It is a good reference book to have on hand. You can find it online at Amazon. Knowledge is power.
You are an amazing advocate for your daughter. I wish my family was half as supportive. Good luck to you in your quest to find help. Take care and God Bless.
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