New here, daugther with fibromyalgia?

New Topic Post Reply Printable Version
26 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

Kelsie
Regular Member


Date Joined Jan 2008
Total Posts : 60
   Posted 4/10/2010 12:17 PM (GMT -7)   
Hello.  I have a 17 yo daughter that I have questioned for quite a while if she could have FM.  She has been diagnosed with ulcerative colitis and we have been basically told that her aches and pains are due to that.  HOWEVER, her uc is under perfect control, but she continues to have horrible back pain.  I haven't pushed the diagnosis with fear that it could really be something else, and then they would stop looking.  I know there is something going on with the connective tissue.  She has had steroid injections, iontophoreses, electrotherapy, ultrasound, flexeril, dolobid, celebrex, etc, and nothing has helped.  Oh, acupuncture did help her back for a while.  She also has POTS.  She is currently having a hard time physically and mentally with terrible concentration difficulties.  In talking to a POTS doctor who also works with FM and CFS, I told him about her ongoing back pain and knots.  He suggested manual therapy and perhaps Cymbalta.  But, she is lacking a physician (pediatrician) that is willing to try medications very willingly (the dr. I talked to isn't taking new patients).  Because she is 17, it is hard to find an adult dr. to see her.  AND, I honestly believe that it is really hard for anyone to really work with you when you have something that isn't life threatening and are still breathing.  I know there are treatments out there that could improve her quality of life.
 
Anyone have any suggestions on a wonderful dr. that would treat a 17 year old?  The perfect doctor would be one that works with FM and POTS (Postural Orthostatic Tachycardia Syndrome).
 
Thanks! 

Kelsie
Regular Member


Date Joined Jan 2008
Total Posts : 60
   Posted 4/10/2010 12:34 PM (GMT -7)   
Okay, I will be the first to reply to myself!  smilewinkgrin  I was just reading in FM 101 that costochondritis is common with people that have FM.  My daughter had that for over 6 months of continuous pain a year ago!  She had steroid injections, nerve blocks, medications and didn't find any relief.  I think it finally got bored and decided to move to her back!  Are you telling me that a drug like Cymbalta could have helped instead of all the agony she went through with injections, etc??

Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5929
   Posted 4/10/2010 3:36 PM (GMT -7)   
Kelsie,
Wow, that's a tough situation. The climate is a lot better for us than it used to be (as far as being taken seriously) but still has a long way to go. I sure hope you find a good doctor for your daughter soon. Now I have to go look up POTS (a new one on me), since I get tachycardia from time to time and no one pays any attention!
Debbie
 
Diagnosed: Fibromyalgia, Meniere's, mild liver damage (why?), keloid scar tissue (from burn) on back, arthritis, lumbar disc damage, IBS, migraine
 
Meds: Nortriptyline, Clonazepam, Darvocet as needed
multivitamins, l-lysine, probiotics, magnesium, malic acid, calcium + vit. D, vit. C
 
Chiropractic adjustments


Kelsie
Regular Member


Date Joined Jan 2008
Total Posts : 60
   Posted 4/10/2010 4:06 PM (GMT -7)   

Debbie, POTS symptoms and FM overlap along with CFS.  The good thing (lol) about POTS is that there is a way to diagnose it!!  A tilt-table test is done and you heart rate goes up 30+ beats a minute just by being put upright.  My daughter was 80 lying down and 135 when put upright (it doesn't happen right away, though).  Basically the blood pools in the extremeties and the hear pumps faster in attempt to get more blood flow to the brain.  That is what causes the fatigue, dizziness and concentration problems (plus others).  It is an autonomic dysfunction. 

One of the biggest obstacles I feel my daughter faces is her age.  She is still considered a child and I don't feel most doctors take them seriously (hence looking for an adult dr).  Because they don't demand help, and there is no diagnostic "test", they can easily get brushed off.  Well, I have had it and I KNOW there is possible help out there, so it is up to me to be the "mommy bear" and find it for her!  Because she is still able to go to school (which she wasn't when first diagnosed 2 years ago), and isn't failing, they seem to think it is okay.  Well, she is SO fatigued, can't think straight for anything (often says the wrong words), dizzy and miserable.  She is a 4.0 student (but falling behind in one class), REFUSES to let this get her down and fights it really hard.  Therefore, I feel she is penalized.  In fact, she plays sports and was sidelined due to her health for a couple years, so as long as she can stand upright, she plays no matter how much pain she is in.  Comes home in tears and collapses sometimes, but she won't give it up.  But, if there is help out there, why should she have to suffer on a daily basis?  I worry what this may do to her emotional state, and she sees a psychologist (who says she deals really well) from time to time just more or less to monitor her, but I don't want to just wait until she has a breakdown and then try to find help!  You all know how not feeling well can wear on you emotionally.  She has 2 "diagnosed" conditions I also worry about how another one will affect her.  But, I deep down think it will validate her and give her hope to finally feel better! 

Sorry to rant, you can probably sense my frustration!  mad   


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 4/10/2010 4:07 PM (GMT -7)   
Hi Kelsie!

I'm so sorry your daughter is in such pain...she's so very young for this. If she has fibro then she certainly needs to have a good doctor to help her learn to handle it. We have many members who have had fibro since they were children or even since birth. Good doctors are hard for adults to find let alone children. But I would suggest a rheumatologist, especially a pediatric one. Also in the Fibro 101 thread there's a link to university/teaching hospitals. They won't and don't give up on someone just because of their age. They also are on the cutting edge of knowledge and technology. I would certainly consider taking her to one that is closest to you.

I do hope you find some help and remember we're always here if you need us.
Chutz
Gravitation is not responsible for people falling in love.
Albert Einstein

(\_/)
(o.o)
(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.


Kelsie
Regular Member


Date Joined Jan 2008
Total Posts : 60
   Posted 4/10/2010 4:20 PM (GMT -7)   

Chutz, you are probably right, she may need to go back to her rhematologist.  She was there for her back and costochondritis and the only thing they wanted to treat her with was NSAIDS and said it was "probably" due to her UC (which she was on medication for, and they said it must not be RA for that reason).  But, they didn't check tender points--which I am sure she has because they are ALL over.  I barely touch her neck, shoulders and back (which have big knots all over), and she is in a lot of pain.  So, needless to say, I wasn't that thrilled with her rheumy.  Maybe I just need to go there and ASK if she could have FM and for Cymbalta for the pain?!?!  I just worry that sometimes doctors are perhaps too quick to say FM or CFS when there could be something else going on.  Also, that there is no "cure", so basically learn to live with it. 

What I really hope to find is a dr. that works extensively with both POTS and FM.  We aren't afraid to travel if that is what it takes.   


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40568
   Posted 4/10/2010 5:29 PM (GMT -7)   
Hi Kelsie,

I just wanted to welcome you to the HealingWell fibromyalgia forum. You have gotten a lot of feed back on this thread from a group of wonderful members and I am happy for that.

I know how hard it is to watch your children suffer. I hope that you do find a good doctor soon so your daughter can get some relief. It has to be hard to focus on her studies when she is in so much pain and uncomfortable. I really hope that she gets some relief soon.

Keep posting and let us know how things are going for you and your daughter.

Best wishes to you both.

Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5929
   Posted 4/11/2010 8:13 AM (GMT -7)   
I'll be thinking of you and your daughter, Kelsie, and hoping you get the help you need soon. Doctors who actually care seem to be a rarity these days. Thanks for your answer about POTS.
Debbie
 
  Diagnosed: Fibromyalgia, Meniere's, mild liver damage (why?), keloid scar tissue (from burn) on back, arthritis, lumbar disc damage, IBS, migraine
  Meds: Nortriptyline, Clonazepam, Darvocet as needed
multivitamins, l-lysine, probiotics, magnesium, malic acid, calcium + vit. D, vit. C
  Chiropractic adjustments


KirstensMom
New Member


Date Joined Jan 2009
Total Posts : 4
   Posted 4/12/2010 11:32 AM (GMT -7)   
Kelsie,

My daughter is 16 and also has fibromyalgia. It was very difficult to find a doctor that will treat her, as YOU KNOW, its her age. They don't want to give them anything and its agony for them and us as Mothers knowing that there is nothing we can do to take away the pain.

However, I went to The National Fibromyalgia Association site (dont know if I am allowed to put the link?) and found a doc willing to treat her at her age! He has rxed Lyrica for her. And over the counter vitamin D3. He wont give her anything to help her sleep but our GP has rxed Amitriptyline to take before bed. Also the dentist fitted her with a night guard so she cant clench her teeth while she sleeps.

The first doc that dxed her was a DAN doctor, an autism doc. Not because she has autism. Because her fibro was triggered by the Gardasil vaccine,( like many other young girls ) DAN docs understand vaccine injuries and well, they listen. I had to quit that doc because she didnt take insurance.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 4/12/2010 3:08 PM (GMT -7)   
Hi, Kelsie, and welcome.  I have costochondritis and I am treated with ibuprofen with food.  That helps with taking the edge off of the pain.  It comes and goes with me but it is quite painful...sometimes it just hurts to breathe.
 
I had steroid injections in my back because of muscle knots the size of golf balls but the injections didn't do a thing.  A gentle massage is what helps loosen the knots in my back and shoulders.  People with fibromyalgia would have a terrible time with a deep massage...at least most of us.  Here is a link to find a good massage therapist in your area if you are interested.  These therapists have to continue their education by taking courses yearly to continue to be certified.  My massage therapist is a member of this and she is fantastic.  Be sure they work with fibromyalgia customers. 
 
 
Also, check out the link in Fibro 101 about malic acid/magnesium supplements.  I use these and they do help me with the pain and fatigue.  I see you already are giving her more vitamin D3.  Many with fibro are deficient in these vitamins and nutrients.  Be sure to pass this by your doctor...when you find one.
 
Your daughter's attitude is terrific and will help her immensely with this illness.  You can't give up and not move.  She wants to live her life and she will have a full and enjoyable life, too!  She will learn to pace herself and know what her body is capable of doing without causing a flare.  So, give her a gentle pat on the back!  You must be so proud of her!
 
I am so glad you found us and joined in.  Your daughter can be on this forum, too.  We have had teens here before.  They have to be at least 13 to be here and we are family friendly!  So, if she would like to hear "straight from the horse's mouth" have her come on.  We would love to have her and help her.  Meanwhile, don't hesitate to ask questions.  We are here to help you.
 
Welcome, KirstensMom!  All of the above is for you, too.  I'm glad you are here.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


pksmdrag
Regular Member


Date Joined Mar 2010
Total Posts : 72
   Posted 4/12/2010 4:40 PM (GMT -7)   
Hi Kelsey and other moms - I am the mother of a 14 year old daughter who has fibromyalgia. I jsut wanted to comment on the doctors. We ended up switching doctors after we found out the hard way that our doctor apparently didn't believe in fibromyalgia or chronic fatigue syndrome (its still a mental illness to her). I had been with that doctor for 30 years! Anyway, we switched in January. Our new doctor checked my daughter out, ran more blood tests. She suspected fibro. Referred us to a pediatric rheumatologist (it was the same doctor that my rheumatologist recommended!). The pediatric rheumatologist diagnosed my daughter with fibromyalgia and POTS. However, that doctor wouldn't follow her. They tell you to go work with the pain management clinic at the Children's hospital. Anyway, two days later we saw an internal medicine doctor (not pediatric) who specializes in Chronic Fatigue Syndrome and Fibromyalgia. (I had had this appointment scheduled for weeks before the pediatric rheumatologist referral.) Anyway, after talking to this internal medicine doctor, we decided we really liked him. He seemed to care about my daughter and trying to help her. You could tell he would weigh the risks versus the benefits of the different meds. He put my daughter on Lyrica. She has found some relief at 100 mg. The pain is still there but tolerable. Her biggest issues are sleep and no energy. He has her on Rozerem for sleep. At first I thought that was helping some, but I don't think so anymore. She was still awake at 3:30 am last night. Last Thursday night she was not able to sleep all night! She was a mess by morning. We aren't sure what happened. She had just had an eye exam Thrusday afternoon. Both eyes were still dilated by morning (but my son's weren't). She also had hand tremors. She was lifeless the whole weekend. Oh, we live in Connecticut. You might check with the person that heads up your local(State) Chronic Fatigue Syndrome and Fibromyalgia chapter. The woman that heads up the one in my state was wonderful and full of info. She talked to me for 4 hours once! She had lots of info on the doctors that we were considering. Its nice connecting with other moms who's kids have this. What an awful illness. So hard to understand. Good luck.

Kim

Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5929
   Posted 4/12/2010 7:51 PM (GMT -7)   
A 15-yr-old girl in my church was also diagnosed with fibro recently, and I feel so bad for her. She tends to do too much, (naturally,) when she feels better and then flares big time, to the point of vomiting from the pain. Poor girl! I think I may have been pre-fibroic (?) all my life but I never had this degree of pain at that age. She's being home-schooled now, and I see her life shrinking each month. Her mother and grandparents are all on it and are handling it intelligently, with meds and everything, so I don't know what they could do differently. It just stinks.
Debbie
 
  Diagnosed: Fibromyalgia, Meniere's, mild liver damage (why?), keloid scar tissue (from burn) on back, arthritis, lumbar disc damage, IBS, migraine
  Meds: Nortriptyline, Clonazepam, Darvocet as needed
multivitamins, l-lysine, probiotics, magnesium, malic acid, calcium + vit. D, vit. C
  Chiropractic adjustments


Kelsie
Regular Member


Date Joined Jan 2008
Total Posts : 60
   Posted 4/12/2010 8:16 PM (GMT -7)   

I don't remember the ins and outs of the forum, but can we email or private message each other? 

I had this long reply to post and accidently erased it.  Now I am just plain too exhausted to write anything.  I will get back to you tomorrow!  Thanks for the replies!!!


pksmdrag
Regular Member


Date Joined Mar 2010
Total Posts : 72
   Posted 4/13/2010 4:28 AM (GMT -7)   
My daughter is housebound, too. It is so hard. She doesn't throw up, but has no energy. The pain is around 3 - 4 with Lyrica. Sleep issues are still a really big issue. We go to the doctor t his Thursday, so maybe we will try something else for sleep. She only leaves the house once a week at best. (And that didn't happen last weekend.) A tutot comes to our house for an hour a day. My daughter is only carrying two classes at this time. She will be wrapping up one in a week or so and may start back on another class that was dropped early December. As a parent it is so hard to look at what this illness does to our kids. Of course, we stay strong for them and always offer hope. To the moms of the teenagers - are any of your kids struggling with sleep issues? If so, what worked for you? My daughter just can't get to sleep. She is fine once asleep.

Kim

KirstensMom
New Member


Date Joined Jan 2009
Total Posts : 4
   Posted 4/13/2010 4:43 AM (GMT -7)   
Kim,

kirsten takes amitriptyline before bed. Im not quite sure its still working for her though. She is struggling in the mornings.

SassyMyKitty
Veteran Member


Date Joined Apr 2009
Total Posts : 673
   Posted 4/13/2010 4:49 AM (GMT -7)   
Kelsie,
I am so sorry that your daughter is going through all of this. I know it must be more frustrating for her than it is for you, and that is really saying something. If you lived in my area, there is a wonderful doctor I would suggest. Mine. He is excellent. He's been through a lot with me and he totally understands me. It is hard to find a doctor to take a 17 year old seriously. I am almost 22 and I still have issues with that at some places. If your daughter doesn't seem to have a voice when it comes to these doctors, then you have to be her voice. Be assertive. You're the momma bear and you have to look out for your cub. My mom uses that analogy all the time. LOL. You might look into a family doctor. They treat both children and adults. I see a family doctor. You might also take her back to the rheumy. If you suspect that your daughter has fibro, then let the doctors know. There are many tests they will need to do to rule out everything else. This can be a really long process. Make sure they do all those tests, too. Because for some doctors if you mention that you think it is FM, then the doc will give her some meds and send her on her way. You need to make sure that everything else is ruled out before an FM diagnoses. I wish you both the best of luck. I know this must be so hard on the both of you. Keep us posted on how things are going.
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind. Dr. Seuss
 


pksmdrag
Regular Member


Date Joined Mar 2010
Total Posts : 72
   Posted 4/13/2010 7:20 AM (GMT -7)   
Hi Kirstensmom - the first doctor that diagnosed my daughter with fibro had her on amitriptyline and a beta blocker. We decided to go with a different doctor, so he changed her meds. She was only on amitriptyline for about two weeks. We never saw any difference at that time.

Is your daughter able to go to school? How debilitated is she or was she?

Kim

KirstensMom
New Member


Date Joined Jan 2009
Total Posts : 4
   Posted 4/13/2010 12:43 PM (GMT -7)   
Kim,

Kirsten was homebound last year for more than half of her freshman school year. We had a Teacher come tour house twice a week for two hrs each day. We liked her, but she covered our whole school district. Kirsten was in AP classes and the teacher was unable to help her with the more difficult courses. She basically just passed on assignments. When Kirsten was able to, we would go up after school and her real Teachers would help her.

The problem we had with all the doctors was that even though she had every test run, some several times, they all come back negative. Because they all come back negative, it must all be in her head. "She needs a psychologist!". One Emergency Room Doc, made me leave the room so she could be sure there wasn't something Kirsten just didn't want to say in front of me. I guess I understand that, but I was livid.

What these Doc's who won't listen do not understand is that Kirsten would much rather be at school with her friends, then hanging out with me in waiting rooms. She would rather be shopping and learning to drive than, laying in a darkened room all day, all weekend.

I had suspected it was fibro and then when that was confirmed we were both so relieved to have a name. Relieved to have a doc take her seriously. I just remember crying and being so, so thankful.

She was really bad in the begining. The Migraines, backpain, fog, fatigue, bodyaches. Well, you know the drill.. The doc gave her cymbalta and amitripityline and had her do aqua therapy for 6 weeks. She slowly started feeling better. She begged to go back to school and her doc wouldnt let her. The doc has to release her to go back to school. She finally told the doc that I was driving her crazy and if she had to spend one more minute with me.... Well the doc said GO BACK.

Then just around Christmas last I noticed that she hadn't needed a refill on her rx's for a while. The meds were working because she decided she didnt have fibro anymore and quit taking them. Doesn't work that way.

She is on a 504 plan at school but has missed a lot of days this year. I can not force her out of bed when I know she is in a flare. I can not take her to the doc everytime she has a flare. Over all she is doing much better, she just got a part time job and is keeping her grades up. We havent been to the ER in a year, knock wood. She just has to learn to pace herself because she will pay for what she does today, tomorrow until her body says it forgives her.

Carleen

Kelsie
Regular Member


Date Joined Jan 2008
Total Posts : 60
   Posted 4/13/2010 5:55 PM (GMT -7)   

Wow, it is interesting seeing other storys of teenage girls and how they are affected by this.  My daughter isn't as bad as she was 2 years ago, and we certaily don't want to go back there!  She is a fighter, though, and does as much as she can even if it means she knows she will pay the consequences.  But, I can't blame her, she wants to be a teenager!  And, she hardly does anything on weekends with friends or anything anyway because she is always so tired, so when she feels up to doing something I usually let her do it, but with restrictions.  I won't let her stay out too late because that is very hard on her.  Every time she stays at a friends house and they stay up really late, she suffers for days.      

A bit of an update~the ADULT POTS dr. got back to me and said he would see my daughter!  I felt like I just won the lottery!  I had been through so much in the past week trying to find someone to see her.  She also has an appointment with a therapist (an M.D.) for manual therapy for her back.  Do any of you have experience with that?  We haven't gotten the results of her lab work that she had done, though.  I will call tomorrow.  Because we haven't heard, it makes me assume everything was fine.  Of course.   

Also, I contacted her rheum and he didn't want to see her--said it sounds like she has a pain problem--you THINK??  I said I suspected FM and he said they (rheum) see patients with "inflammatory" back issues.  Well, we are pretty sure it isn't that, so when I asked WHO would diagnose FM, he said--are you all ready?  There isn't any diagnostic test to diagnose FM!!  shocked   He said it is mostly ruling other things out which we pretty much have in her case.  But, he said we could go back to our primary and they could do a referral to the FM Program.  Oh great, I thought, go to this 2 day thing and listen to how you just have to learn to live with it??  I said, thanks, but she has an appointment with her POTS dr, and we will discuss it with him.  I will also bring it up to the PMR dr. and see what he thinks.  Do your girls or any of you have a lot of knots in your back that are painful to the touch? 

Kirsten's mom-Did the Cymbalta take long to notice an improvement for your daughter?  What did it help most with?  I am more comfortable with that than Lyrica because I took Lyrica and had bad side effects.  Kim, I am so glad that it has seemed to help your daughter, though!!  Everyone is so different with medication response.  My daughter takes a beta blocker, but that is for her POTS.  And, again, POTS and FM are often intertwined.  I am very intersted in her tyring Cymbalta--although it is expensive!!  But, whatever it takes, right? 

Kirsten's mom, I am kind of surprised your daughter's dr. wouldn't let her go back to school.  With POTS, they demand it-well, her last dr. anyway.  They said the only reason to stay home from school was if you were vomiting or had a fever.  Guess it doesn't matter if you can walk, are in tons of pain or dizzy!  LOL!!  Oh, and the whole psychological thing!!  We have kind of been there too, but they found out that she WANTS to go to school and be a normal kid and doesn't get any kicks out of being home in bed all day!  I had one nurse tell me she wouldn't allow her to have a computer or cell phone if she was home.  I told her straight out that there was NO way I was going to take her only link to friends and the outside world away from her.  I said, THAT would cause depression in a heartbeat!  They just didn't believe that she felt so horrible because there was no "test" to really tell!   

Sassy, where is your dr.?   

Thanks all!

Kelsie  

 


pksmdrag
Regular Member


Date Joined Mar 2010
Total Posts : 72
   Posted 4/14/2010 3:25 AM (GMT -7)   
Good morning Kelsie and Carleen - our doctor is in Connecticut. We go to see our doctor on Thursday. I hope he can get her started on some physical therapy. Carleen, your description of your daughter in a darken room, etc. describes our situation, too. I would love to get past this. I have always loved light and bright, so when I look into our living room and see how dark it is, its a constant reminder of what is going on. Kelsie - back a few months ago (This all started for my daughter the beginning of September when she got sick with what we think was the H1N1 flu) we limited her electronic time. Nothing seemed to matter - she was just so sick and dead to the world. We never took her cell phone away. She wouldn't use it when she was at her worst. Heck, she couldn't even stay vertical. We aren't as bad as then, but I sure wish we could get further along this journey. How long has each one of you been dealing with this? Are both of your girls able to go to school full time now? Thanks.

Kim
 
P.S.  I don't know if she had knots in her back.  I do know that I am able to touch her more than I could at one point.  For weeks she laid on the floor in so much pain.  Nothing seemed to help the back.

Kelsie
Regular Member


Date Joined Jan 2008
Total Posts : 60
   Posted 4/14/2010 6:26 AM (GMT -7)   

Kim, we have been dealing with this for a long time, but it really came out when she was diagnosed with POTS 2 years ago at 15.  Because they apparently overlap and we still don't have a "diagnosis" of FM, it is really hard to say.  When she first was dx with POTS, she couldn't go to school.  She couldn't do homebound either because she was so sick.  The school was great, though.  I managed to get her an IEP (also had a 504 right away because of her UC), and that has helped, but luckily she hasn't been as bad since as in the beginning.  My daughter really doesn't go to "school" full-time, but is still getting in full time+ education.  The biggest single think I think is that she doesn't start high school until 12:30 and only has 3 classes-until 3pm.  She is also doing PSEO at the local college and has one class on campus 2 days a week 10-11 Monday and Wednesday and takes 2 others online.  She is so fatigued all the time and has difficulty concentrating, that I don't think she could ever handle an 8-3 day every day.  Makes me worry about the future for her (especially as she has very high goals of going to med school), but there is a good chance she could overcome the POTS.

One of the hardest things lately is that she is so sensitive--emotionally.  I can hardly bring up the school work subject.  She is behind in one of her classes and I feel she could be putting more effort into catching up, but then again, I have to remember that it is probably a huge struggle for her to just keep going to school and keeping up as well as she can.  It is just so hard to find that balance as a parent!!  I also worry that the teachers just don't get it either--especially college-where her class she is behind in is at! 


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 4/14/2010 8:01 AM (GMT -7)   

Kelsie, if you want to email someone and if they have their address in their profile, you can either go to their profile or click on the little envelope by their name on any of their posts and it will pull up a "write mail" with their address already in place.  Hope this helps.

Sherrine


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


Kelsie
Regular Member


Date Joined Jan 2008
Total Posts : 60
   Posted 4/14/2010 9:04 AM (GMT -7)   
Thanks Serrine, I was hoping there would be a "message" option, but I guess not.  I am guilty as well of not having an email address.  I will have to update that.

pksmdrag
Regular Member


Date Joined Mar 2010
Total Posts : 72
   Posted 4/16/2010 2:43 PM (GMT -7)   
Hi Kelsie - We got to see my daughter's doctor the other day and we are going to try a short course of Ambien to see if we can't get her sleep schedule flipped around. It haelped alot last night. She has felt pretty good the past couple of days. Its so nice to see. Last weekend she was feeling terrible so she didn't see anybody. Atleast now she has a friend over.

Is your daughter a Junior? If so, I would think you would be starting to look at colleges. My son is a Junior, so that's what we need to start doing. Finding it a little challenging with one being homebound!

Does your daughter have trouble getting up in the morning (is that why she starts so late?) I know there is no way my daughter could make it to school for a 7:30 am start. When she was going to school we had to switch to a later start, but even 10 am was too early.

Any luck on finding a doctor to treat FM, POTS, etc.?? Vanderbilt Hospital is supposed to be very good at diagnosing POTS with a real good understanding of CFS. I don't know where you live, but you might check into that.

Hope your daughter has a little strength to doing a little something this weekend. We are on vacation next week, but my daughter's tutor is still going to come next week. We are still trying to catch up!

Have a good one.....

Kim

Kelsie
Regular Member


Date Joined Jan 2008
Total Posts : 60
   Posted 4/16/2010 7:48 PM (GMT -7)   

Hi Kim.  Glad to hear the Ambien helped your daughter.  What do you mean by her sleep schedule flipped around?  Is she not falling asleep until really late?  What kind of dr. did she see? 

Yes, my daughter has a TERRIBLE time in the mornings, but she also has other conditions that contribute to that.  She goes to bed plenty early and sleeps plenty late, but I'm not sure if she isn't sleeping well or if it is her health that is causing such terrible fatigue or a combination.  She sees sleep medicine next week.   

I was able to get her into the adult POTS dr.  Not sure how much experience he has with FM, but because they overlap so much, I am hoping so!  He is a neurologist by specialty.  It is certainly worth checking out, but it won't be for about 3 weeks. 

Yes, she is a junior.  She pretty much has figured out where she wants to go and we have visited and met with people there.  As long as we can keep her health somewhat under control, she will be fine as far as college goes, she is a very good student.  Because she is doing some college now, she is banking up her credits so to speak, so she can take a lighter load in college if needed. 

She really doesn't do much other than go to school, but she has prom tomorrow and is in bed already--she will go no matter what.  I KNOW it will not be good for her on Sunday!!!  I really hope she decides to come home and rest rather than go to the after-prom party.  But, I will leave that up to her, she will have to learn how to manage.  I don't want to tell her she can't go because of her health.  It is hard enough being a teen with chronic illnesses without me reminding her and almost "punishing" her for it.  She will make the decision and have to live with the consequences.  That is how they learn, right??  As a parent, it is so hard to find that balance.  Ugh!  I can't seem to find the "raising your child manual" she came with!!   smilewinkgrin   She has 3 older, healthy brothers, but this is a whole other ballgame with different rules!!  yeah

I hope your daughter gets caught up.  Mine is still behind and every time I bring it up, she gets upset.  She has such a difficult time concentrating and I know she feels terrible.  Again, where is that balance??  I want to be stern with her and tell her she HAS to set goals on getting it done, but she is SO darn sensitive!!  I'd MUCH rather be the one sick.  If I could only take it from her!!

New Topic Post Reply Printable Version
26 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Saturday, December 03, 2016 2:46 AM (GMT -7)
There are a total of 2,731,994 posts in 300,980 threads.
View Active Threads


Who's Online
This forum has 151146 registered members. Please welcome our newest member, LadyCapricorn.
190 Guest(s), 0 Registered Member(s) are currently online.  Details



Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer