Last year my 14 year old daughter was diagnosed with fibromyalgia, SEA (type of arthritis)- auto immune disorder associated with the spine and tendons, she has asthma, is losing her eyesight, is hospitalized at least once a year for different illness (mostly pneumonia), has lymphocytic colitis and is lactose intolerant. She is treated at the Cleveland Clinic-one of the best hospitals in the world. I am a nurse but I deal with head injuries and spinal cord injuries. I am at a loss as to what to do to help my daughter. I don't know what to ask the doctors, what tests or meds she should be on. She recently started methotrexate injection with a leucovorin recovery med. Has anyone else tried this or is currently taking it. She has had to have her dose increased 3 times already because it works for awhile then she starts feeling lousy again. Her arthritis doctor initially thought she had rheumatoid arthritis but the blood test was negative. Should I ask that it be repeated? My daughter misses a lot of school (but still maintains a straight A average :-) She was recently hospitalized for shingles. I know this is a lot of information and not in a very organized fashion, I feel I am just rambling but I am really at a loss as to what I can do to help her. It breaks my heart to see her cry every single morning when I wake her up for school. Any help would be so greatly appreciated.
the best things you can do for her
- is love her hug her (people stop touching people because they think they will hurt them - but it hurts more to have no hugs)
-very important is to listen to her and trust her - mostly listen - you might not understand what she is talking about and it will probably in some cases make no sense to you - just remember it makes no sense to her as well
-i have to say youve done the best thing already just by asking this question - you are an amazing mom to do that - my family wasnt there when i needed them most - and you might want to wish it away and pretend its not there - your daughter feels the same way garanteed sp?
first year is the scariest - unexplained pain that you cant make sense of
she has a lot of things going on - fibromyalgia rarely comes without bringing with it other illness - why - i dont know
epsom salt baths
heating pads - fibro does not like cold at all
vitimins especially the b vits help
caltrate may help sleep at night
obus forms - good posture - orthotics
gentle stretches - walking is the best excersize for fibro
i dont know these meds shes taking - keep open communication with the doctors and tell her to tell them every and anything she is going through - the more info they have the better they can treat
im concerned about the eyesight - why is that happening - is ct or mri needed - or might it be diabetes (i do not know much about this so i best stop there) there are forums here were you can ask the doctor on the home page there are abcs for patients and abcs for asking the doctors
i hope this helps - sorry i dont know much on the medical side just the practical - i have fibro, arthritis, thyroid and many other pain things
knowledge is power
and sometimes you just need to take a break and try to forget for a while - hard for her as the pain keeps reminding - any hobbies she really likes - or something that she would have fun doing(to help take her mind off whats happening) and forget about the pain for a while (has to be under her control) - overdoing it sometimes causes flare ups - everyday you learn a bit more
i hope this message has helped you
WOW, thank you so much for all the wonderful information. I have a question about the obus forms, what are they? I've never heard of that. You really hit the nail on the head with some of your suggestions. We've been learning as we go and finding things that help/hurt by chance. My daughter was very active, she ran cross country, played baseball and basketball and then slowly started quiting her activities. It got to the point that she didn't even want to attend church anymore. The eyesight thing seems to be a fluke. The doctors thought at first that it was caused by inflammation because she has inflammation through out her body but it looks like it is just bad eyesight. She is legally blind without corrective lenses but so far is doing well enough with her glasses. She was tested for diabetes when the doctors started testing for auto immune disorders. She usually lays on the floor (warm from the wood stove) and reads a book. I guess it is like you said, just take it one day at a time. Thank you again for your post.
most of us afflicted by fibro were very active - which makes it that much more frustrating and so hard to pace ourselves (which is very important for fibromyalgia) - oh and i didnt need glasses till i got the fibro and my vision quite often gets worse as the day goes on ?? dont know why - the obus forms are (sometimes covered by insurance -might need script from doctor) sitting aids(sleeping aids as well) to help preserve/maintain good posture (very important for fibro) - they have bum supports (good for many ailments sciatica, leg pain, hip pain, back pain, etc)(these might help her for church as the pews are so often uncomfortable) and short back and tall back supports(you have to see them to understand how they work - they help many with fibro , pillows (these are the ones i have- they have other things as well) - also good to move body every so often as to not allow stiffening up - even watching the tv if i cant watch with good posture and support and the tv straight in front of me ... i will get pain - if i have to turn my head to watch - i will have headache and/or shoulder pain in no time and that pain can last from a couple hours to a couple weeks
some people get fibro severe and some get manageable fibro - i am disabled by my fibro (and other things) but this is not the way for all
check out obusforms at this link www.obusforme.com and click on products - most pharmacies carry some obus forme products
i cant stress enough how important sleeping in good posture is and i can get rid of some pains just by the way i sleep - i sleep on my back -thats best for me - i have a duvet now have which i will never ever go without - comfortable sleep is very important
good postured sleep -i use about five pillows at night - sleep with support - anytime she needs to use her muscles to support her sleep position - she may find pain in that area in the morning - my neck and knee supports are the most important(the best support i have found for my neck is an old pair of flannel pj pants folded in half and turned at the sides so my head doesnt fall flat to the pillow to one side or the other or else migraines and/or shoulder pain will be a sure thing in the am that can last all day or longer
again i think you are amazing - she is very lucky to have you as you are very lucky to have her - be good to each other especially when in the darkest of times and you will be surprised were this will journey take you and what you learn about yourselves - as you already know ! -
oh yeah the best time to schedule activities is in the morning after the stiffness of getting out of bed (the hardest part) some people wake up 1 hour early and take an anelgesic sp? so when they wake up they are in less pain thus a better frame of mind and as the day goes on we get feel our bodies getting heavier and heavier to haul around - thats what it feels like any way
narcotic pain killers are proven to be not addictive when they are used to fight pain - others may disagree but i am very thankful for narcotic meds along with my non-narcotic meds as i would not be here today if not for all my meds and most importantly - my amazing son ! -
thank you - im very happy to have helped
So sorry to hear how much you little girl is going through. My 16 year old daughter was diagnosed with the same about 2 years ago. I have Lupus (SLE). I understand you are a nurse, so I do not want to step on your toes, but has she been tested for or has Lupus been concidered. Fibro. does not usually come with such an array of devistating things. It is not fatal and does not cause fatal issues. However, what you describe sounds like Lupus. There are no definitive blood tests for Lupus and none for Fibro. With Lupus your sed rate and ANA levels are checked. A low sed rate and /or normal ANA does not mean you do not have Lupus etc. As my rheumotologist says to his interns, "treat the patient not the lab results." Both Firbo and Lupus, amongst some other autoimmune conditions are treated the same. The only thing which concernes me with this is that if there is no diagnoses of Lupus etc. but only fibro. something maybe missed, although I believe you are on top of her treatments and her signs and symptoms. What I do, whether doctors like it or not, for myself and my daughter is keep a journel of everything, request copies of all tests and lab work for my own records and stay one step ahead at all times. I am also a "medical " person (disabled) so CMEs on related subjects are always available etc. Do not ever be afraid to make a doctor stand still and talk to you. You are not at work, these are not your bosses, now they are working for you ! I do not care who I "insult" by talking to them with any knowledge I have and I ask whatever I want to. Beleive it or not I have gained respect from most of our doctors by being like this and now I can talk shop and business with them. There is nothing more precious then our children therefore no one should dare dismiss us and their care.
You daughter is very lucky to have a mom who has taken this seriously and has gotten her the help she needs and deserves. I was not that lucky but my daughters are. I could go on and on, since all three of my daughters have health conditions and we have traveled some long roads. I hope some of what I have said helps in some small way. I would be more then happy to answer any question you may have if I can answer it, of course. I can also shut up now and tell you I will keep you and you family in my prayers.
I have had fibromialgia for 17 years and I have tried a lot of things. I eat extremely healthy. I cook everything I eat. I don't eat meat and combine food properly, drink a lot of filtered water. I take multivitamin-minerals (don't take centrum it has aluminium), complex B, extra vitaminC, calcium/magnesium, eat royal jelly, propolis, pollen and raw honey. The most help has been meditation, relaxation, breathing exercises, visualisation and faith that I will get better. For sleep you can use melatonin. Always try to look for the natural alternative. I always have backpain but I don't have extreme pain leading to the emergency anymore. I hope it helps.
I just re-read your post again and it sounds so much like lyme disease I decided to write back. I'm a nurse too and I live in Ohio. I won't go into my whole story but will say I got 3 bullseye rashes in the Rocky River metropark. I was told "there's no such thing as lyme in Ohio" by a physican at Cleveland Clinic. I know of numerous cases. My next door neighbor had it (CDC positive test). She got it in her backyard. The testing is totally unreliable and many people test negative despite having severe lyme. I just thought I'd let you know in case you wanted to research this as a possibility. You can learn a lot of information at lymenet dot org. Also, fibromyalgia is just a group of symptoms. It is not a disease. You probably already know this though.
Thank you to everyone for all the information and suggestions. Let me tell you my daughters story. Her name is Ami. She has always been a generally healthy little girl up until she was around 12-13. She has been hospitalized every year for the past 4 years with pneumonia. Every time she had pneumonia she presented with symptoms of severe abdominal pain and I would take her to the hospital. She also has asthma and will have an attack with exercise or anxiety so with the stomach pain she would also have the breathing difficulties. Anyway, while in the hospital in 2006 one genius dr thought that she may have needed her appendix out and called in a surgeon. The pediatric surgeon was out of town and because Ami was pediatric and had pne the general surgeon wouldn't touch her. They decided to "wait and see" so while she was in the hospital they had her NPO "just in case" they needed to do surgery. While being NPO Ami was constantly having loose bowel movements. The nurse asked her how long she had been having this and Ami said "forever". She said that she would have anywhere from 5+ loose or diarrhea bowel movements a day and because she had been doing this for so long she thought it was normal and never told anyone. She ended up having a colonoscopy done which showed she had lymphocytic colitis (which is generally not seen in children, it is usually seen in adults over 60), then we found she was lactose intolerant. While being treated for this she started having joint pain and muscle pain, complaining that she couldn't sleep, didn't want to move around etc. Her doctor recommended she see an arthritis dr and while we were there for our first visit with the rheum dr Ami was direct admitted to the hospital because the "rash" that had appeared a few days earlier was actually shingles and had already started attacking her organs. So while she was in the hosp for that they had infectious disease testing her, did cat scans, bone scans etc. These are the tests I know they did do, I know she was tested for lupus, celiac disease, rheumatoid arthritis, lymes disease and a few others that are not real common and I can't remember their names. During this time Ami also so an opthamologist due to her eyesight an they concluded that her vision loss was not a disease process but just bad eyesight. She left the hospital with an additional diagnosis of SEA and fibromyalgia. Since that time she has gotten a splint (I think it is called a SPICA) for her right wrist and she is starting to show signs of disfigurement in her elbows and toes which leads me to believe it may be rheumatoid arthritis. She is on a variety of medications but they are mostly for her stomach problems. The methotrexate injections are for the arthritis. Because Ami is lactose intolerant and has the colitis it is hard to try to treat with just diet alone but I really hate the fact that she has to take over 20 medications a day. Ami gets blood work done every 4 weeks to check her sed rate, wbc etc and the doctor is looking to do another colonoscopy to see if she has developed crohns. We just recently looked into pain management that has a main focus on relaxation and biofeedback. I must admit that Ami has a better grasp on this than I do and I believe that her strong faith keeps her moving in a positive direction. I want to thank you all again for all the wonderful suggestions, comments and advice that I have read while trying not to cry.
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