J-rap Posted August 9, 2017 Share Posted August 9, 2017 She has had lingering health problems for several years now. She feels somewhat fatigued almost all the time. She doesn't sleep soundly, just "ok." For six months now, she often has severe menstrual pains, but even between her periods -- usually 4-5 days/week, every week. She has been in to see several doctors over the years. They've tested her for so many things. Her iron, vitamin D, and thyroid results are always good. Since her cramps started, they did an ultrasound of her uterus but it was perfect. She does have another appointment with a gynecologist in two weeks. She is 22 and is in college. She has been tested for celiac disease (many years ago she had the celiac biopsy) since she had trouble putting on weight; she has tried the GF diet anyway just to see if it made a difference. It didn't. We do have mild PCOS in our family. She is on birth control pills for severe cystic acne (has been for several years), and it does the trick! We have strong, powerful migraines that run in the family. She gets a migraine headache maybe once/month. I recently started her on B12, magnesium, and vitamin D. I don't know what else to do to help her. Any thoughts or out-of-the-box suggestions are welcome! Quote Link to comment Share on other sites More sharing options...
maize Posted August 9, 2017 Share Posted August 9, 2017 Has she had a sleep study? 2 Quote Link to comment Share on other sites More sharing options...
J-rap Posted August 9, 2017 Author Share Posted August 9, 2017 Has she had a sleep study? She hasn't. Actually, that never occurred to me! What kinds of things would they look for in a sleep study for a young person? Quote Link to comment Share on other sites More sharing options...
popmom Posted August 9, 2017 Share Posted August 9, 2017 (edited) Hmmm. One thing I know (from personal experience) is anxiety. I have chronic pain from pinched nerves in my neck. Health problems can cause anxiety which in turn lead to more physical symptoms--especially sleep problems and fatigue. I am in NO WAY saying her physical problems are "all in her head". BUT...when anyone has had health issues go on for a long time, it can cause anxiety and depression--both of which can really mess with your sleep and energy levels. It's definitely something to consider having evaluated--especially a girl in college. College brings enough anxiety on it's own. eta: Sleep is huge. I agree with the sleep study. If you can find a way to get her a good night's sleep, that may help a ton. Edited August 9, 2017 by stephensgirls 2 Quote Link to comment Share on other sites More sharing options...
maize Posted August 9, 2017 Share Posted August 9, 2017 (edited) A person of any age can have sleep apnea--and you don't have to snore to have it either. Tiredness and difficulty sleeping deeply are good enough reasons to investigate. Edited August 9, 2017 by maize 1 Quote Link to comment Share on other sites More sharing options...
mom2samlibby Posted August 9, 2017 Share Posted August 9, 2017 I would get copies of the test results. A lot of times doctors will say that the results are fine, but the results may be on that edge where issues start to happen. I know when I was test for B12 the range was 150 - 900. That's a huge range and a lot of people don't feel well if they drop below 500. Her iron and D3 levels might be that way. My dad's doctor has put him on D3 for low Vit D. When I asked the level, I was told it was at 30!! 30 is one point away from being diagnosed as deficient. I was amazed that they weren't being more aggressive about raising it, but it was within the range. However, it is way too low to feel good. In the B12 deficiency group that I'm on they recommend that one's iron level be around 80 and folate level around 20, in order to absorb B12 properly. I'd want to know where her levels are for B12, iron, and folate. I'd also want to know what her D level is. It's recommended to be around 65 - 80. I see that you started her on D3. In order to absorb it well, the D3 needs to be combined with K2. Magnesium is also helpful for absorption. My migraines have been eliminated from the B12, folate, iron, D3, and magnesium I started taking 2 years ago. But, I'd start again with testing to see where she is at. Her B12 will show higher now though since she has supplemented. MTHFR might be another thing to look at. 1 Quote Link to comment Share on other sites More sharing options...
Tap Posted August 9, 2017 Share Posted August 9, 2017 Does she have any IBS/Crohn's/Colitis symptoms? Maybe her cramps aren't menstrual? I assume endometriosis has been ruled out? Also abdominal migraines? DD18 had daily headaches for years and finally decided to go sugar free to see if it affected her health. The first thing she noticed was her chronic headaches were Gone! After some trial and error she found they directly correlate to her sugar consumption. Not saying this is your daughters issue, but encouragement to not give up because the answer may be just around the corner in a place she has already looked but not tried. Just a side note...... My dd18 has POTS. Before she was diagnosed she answered 'no' to a lot of the symptoms the doctor asked her about. Because....she thought her dizziness, lightheadedness and other symptoms were normal. She thought when the doctor asked about dizziness, she imagined he meant dizzy like when you spin too fast and can't stand up. Not the dizziness she felt every single day, that made it hard to stand up without pausing first. LOL Her chest pains were her asthma. Her lack of concentration was her ADHD. Feeling cold was due to being skinny (lack of insulating fat in a cold climate). etc So all those questions, when the doctor said 'Do you have any of these symptoms?'...she said, no, even though she does every.single.day. It wasn't until she started getting treatment that she understood what it was like to be free of those symptoms. So, if she isn't getting a diagnosis. you may need to reevaluate HOW she was understanding and answering the questions the doctors asked. 2 Quote Link to comment Share on other sites More sharing options...
Tap Posted August 9, 2017 Share Posted August 9, 2017 Has she had a sleep study? This would be an idea i would pursue as well. DD10 had 3 sleep studies before she was 8yo. Sleep is vitally important. It is absolutely something to consider. Even if sleep isn't her issue overall, it may a clue or a symptom to look at more in depth. 2 Quote Link to comment Share on other sites More sharing options...
displace Posted August 9, 2017 Share Posted August 9, 2017 Sounds like a couple things, maybe endometriosis plus sleep problems. 1 Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted August 9, 2017 Share Posted August 9, 2017 Has she seen a gastroenterologist? What seem to be menstrual cramps could be in the gastro system. So I am seconding Tap's suggestion. Also about rechecking the testing she has had. Was she actually tested for Celiac or just blood tested? Blood test is not all that reliable. Also the diseases Tap mentioned specifically Crohn's and UC are well known for causing weight loss or inability to gain weight. All three of these are Celiac/Crohn's/UC are all autoimmune and it has been my experience with my own AI diseases (different ones) that they get worse with hormonal swings. Irritable Bowel Syndrome still doesn't have a cause but they do know it is associated with other issues such as migraines and fibromyalgia. While the BC pills are helping the acne, they are probably contributing to the migraines. Regardless, the migraines can basically be treated seperately. If you don't want to go to a neurologist for them, I was prescribed 400 mg. of riboflavin daily by a neurologist in Belgium because that was shown by medical research in England and published in the Lancet that it was an effective treatment. The neurologist preferred that I take that as a preventative and didn't want me to take other medications for it since I was already on a slew of medications for all my other autoimmune conditions that could conflict. When I took my youngest to a neurologist here in the states for Migraines and she can't take the Migraine medications because she has moderate to severe Raynaud's, her neurologist here recommended 200mg of riboflavin, I believe it was 500 mg of magnesium (and that can help with cramps of any kind too) and I can't quite remember the dosage of CoQ10. You can probably look online for the headache formula. And I am also recommending a sleep study. 2 Quote Link to comment Share on other sites More sharing options...
Pink and Green Mom Posted August 9, 2017 Share Posted August 9, 2017 Endometriosis was my first guess. I had ovarian endometriosis with pains like you describe. They also hurt in my back, in the area of the kidneys. 2 Quote Link to comment Share on other sites More sharing options...
bagel270 Posted August 9, 2017 Share Posted August 9, 2017 You said she has had the symptoms for several years, and has been on birth control for several years? That may be something to consider. 1 Quote Link to comment Share on other sites More sharing options...
bethben Posted August 9, 2017 Share Posted August 9, 2017 (edited) I had severe stomach/intestinal cramps while I was on birth control pills. They also could have felt like menstral cramps. They really messed up my digestive system. BC pills can really mess up quite a bit. That would be the first place I would look. Sent from my iPhone using Tapatalk Edited August 9, 2017 by bethben 1 Quote Link to comment Share on other sites More sharing options...
J-rap Posted August 9, 2017 Author Share Posted August 9, 2017 A person of any age can have sleep apnea--and you don't have to snore to have it either. Tiredness and difficulty sleeping deeply are good enough reasons to investigate. I wonder if I could just make an appointment with a general practitioner to get this going... Quote Link to comment Share on other sites More sharing options...
J-rap Posted August 9, 2017 Author Share Posted August 9, 2017 Does she have any IBS/Crohn's/Colitis symptoms? Maybe her cramps aren't menstrual? I assume endometriosis has been ruled out? Also abdominal migraines? DD18 had daily headaches for years and finally decided to go sugar free to see if it affected her health. The first thing she noticed was her chronic headaches were Gone! After some trial and error she found they directly correlate to her sugar consumption. Not saying this is your daughters issue, but encouragement to not give up because the answer may be just around the corner in a place she has already looked but not tried. Just a side note...... My dd18 has POTS. Before she was diagnosed she answered 'no' to a lot of the symptoms the doctor asked her about. Because....she thought her dizziness, lightheadedness and other symptoms were normal. She thought when the doctor asked about dizziness, she imagined he meant dizzy like when you spin too fast and can't stand up. Not the dizziness she felt every single day, that made it hard to stand up without pausing first. LOL Her chest pains were her asthma. Her lack of concentration was her ADHD. Feeling cold was due to being skinny (lack of insulating fat in a cold climate). etc So all those questions, when the doctor said 'Do you have any of these symptoms?'...she said, no, even though she does every.single.day. It wasn't until she started getting treatment that she understood what it was like to be free of those symptoms. So, if she isn't getting a diagnosis. you may need to reevaluate HOW she was understanding and answering the questions the doctors asked. I've wondered about endometriosis. She was at a woman's clinic last spring and they did a pelvic exam and ultra sound. They told her everything looked normal. I'm not sure if that rules out endometriosis or not. But, she has another appointment there in a couple weeks. The IBS/Chrohn's/Colitis symptoms don't quite line up with her symptoms. About 7 years ago, she was getting "side" pains a lot (which the doctor eventually decided seemed more like abdominal pains). She went through a lot of testing with a pediatric gastroenterology doctor then and I believe they ruled out all of that. Some of it could be migraine related. Another dd has had (and my dh used to have) daily constant migraines/headaches for years. Those are/were both very stubborn cases. She has been on different diets over the years in attempt to find any links, but as of yet she hasn't found anything specific to her symptoms. I'll ask her if she has been on sugar-free diets. The pelvic symptoms are new and feel different and sharper than the abdominal symptoms she used to have. I do think I want to push for a sleep study though. It would be really nice if she at least felt peppier. l'll look more into POTS. Thanks! Quote Link to comment Share on other sites More sharing options...
J-rap Posted August 9, 2017 Author Share Posted August 9, 2017 Sounds like a couple things, maybe endometriosis plus sleep problems. I think you're right. It's most likely a mix of things that are separate but occurring at the same time. Quote Link to comment Share on other sites More sharing options...
J-rap Posted August 9, 2017 Author Share Posted August 9, 2017 Has she seen a gastroenterologist? What seem to be menstrual cramps could be in the gastro system. So I am seconding Tap's suggestion. Also about rechecking the testing she has had. Was she actually tested for Celiac or just blood tested? Blood test is not all that reliable. Also the diseases Tap mentioned specifically Crohn's and UC are well known for causing weight loss or inability to gain weight. All three of these are Celiac/Crohn's/UC are all autoimmune and it has been my experience with my own AI diseases (different ones) that they get worse with hormonal swings. Irritable Bowel Syndrome still doesn't have a cause but they do know it is associated with other issues such as migraines and fibromyalgia. While the BC pills are helping the acne, they are probably contributing to the migraines. Regardless, the migraines can basically be treated seperately. If you don't want to go to a neurologist for them, I was prescribed 400 mg. of riboflavin daily by a neurologist in Belgium because that was shown by medical research in England and published in the Lancet that it was an effective treatment. The neurologist preferred that I take that as a preventative and didn't want me to take other medications for it since I was already on a slew of medications for all my other autoimmune conditions that could conflict. When I took my youngest to a neurologist here in the states for Migraines and she can't take the Migraine medications because she has moderate to severe Raynaud's, her neurologist here recommended 200mg of riboflavin, I believe it was 500 mg of magnesium (and that can help with cramps of any kind too) and I can't quite remember the dosage of CoQ10. You can probably look online for the headache formula. And I am also recommending a sleep study. The celiac test was done when they did a biopsy of her stomach or intestinal lining, when she was just a toddler! She was very tiny and having trouble putting on weight. She looked tiny and kind of sickly for years, although she felt great and had lots of energy until she was about 15. That's when other symptoms started slowly coming. She is a healthy weight now though and doesn't actually look sickly anymore! She loves to eat. I'm going to look into that headache formula though. Good idea. Quote Link to comment Share on other sites More sharing options...
J-rap Posted August 9, 2017 Author Share Posted August 9, 2017 Endometriosis was my first guess. I had ovarian endometriosis with pains like you describe. They also hurt in my back, in the area of the kidneys. Can I ask you how it was diagnosed? Quote Link to comment Share on other sites More sharing options...
J-rap Posted August 9, 2017 Author Share Posted August 9, 2017 You said she has had the symptoms for several years, and has been on birth control for several years? That may be something to consider. I was thinking that too, and encouraged her to bring it up with both the woman's doctor she met with and at her last dermatology appointment. Both of them encouraged her to stay on it, which kind of surprised me. I'd be interested in knowing if her symptoms changed if she went off of it. It's chancy though. The last time she went off of it to see how her cystic acne would do without it, it became very, very bad again, the worse you can imagine. It just takes over her face and back and generally takes half a year to get it under control again. With birth control pills, her skin is blemish-free. Quote Link to comment Share on other sites More sharing options...
J-rap Posted August 9, 2017 Author Share Posted August 9, 2017 I had severe stomach/intestinal cramps while I was on birth control pills. They also could have felt like menstral cramps. They really messed up my digestive system. BC pills can really mess up quite a bit. That would be the first place I would look. Sent from my iPhone using Tapatalk It does make me wonder... Maybe she'll just need to chance it with her complexion and see what happens. Quote Link to comment Share on other sites More sharing options...
Remudamom Posted August 9, 2017 Share Posted August 9, 2017 Rule out Lyme disease. Symptoms are widely varying but the tiredness is a giveaway. 3 Quote Link to comment Share on other sites More sharing options...
MBM Posted August 10, 2017 Share Posted August 10, 2017 She has had lingering health problems for several years now. She feels somewhat fatigued almost all the time. She doesn't sleep soundly, just "ok." For six months now, she often has severe menstrual pains, but even between her periods -- usually 4-5 days/week, every week. She has been in to see several doctors over the years. They've tested her for so many things. Her iron, vitamin D, and thyroid results are always good. Since her cramps started, they did an ultrasound of her uterus but it was perfect. She does have another appointment with a gynecologist in two weeks. She is 22 and is in college. She has been tested for celiac disease (many years ago she had the celiac biopsy) since she had trouble putting on weight; she has tried the GF diet anyway just to see if it made a difference. It didn't. We do have mild PCOS in our family. She is on birth control pills for severe cystic acne (has been for several years), and it does the trick! We have strong, powerful migraines that run in the family. She gets a migraine headache maybe once/month. I recently started her on B12, magnesium, and vitamin D. I don't know what else to do to help her. Any thoughts or out-of-the-box suggestions are welcome! Since you mentioned out-of-the-box, how about reading about the benefits of fasting? PCOS is discussed here a bit: https://intensivedietarymanagement.com/fasting-polycystic-diseases/ She could possibly glean some information from a Facebook group called Fasting Fungsters or something like that. They follow Jason Fung's advice or work directly with him. Fung is a Canadian MD. I belonged to the group for awhile and IIRC, some of the women were fasting to improve PCOS. She could also research Valter Longo, Thomas Seyfried, and autophagy if she wants some newer ideas to try to incorporate. Valter's book is coming out in English this January. Here is Rhonda Patrick's interview with Valter: FWIW, I am a huge believer in the benefits of fasting and aim to do 3-4 days every now and then. What I aim for is to have my blood glucose to blood ketone ratio of 1.0 or below for as long as possible. I use Precision Xtra for ketones. (The glucose number needs to be converted to mmol/L.) If she's interested, the Fasting Fungsters group is a terrific resource but they first want people to read some of the articles they've linked. Jason Fung also puts all of his information online for anyone who doesn't want to buy his books. 1 Quote Link to comment Share on other sites More sharing options...
Pink and Green Mom Posted August 10, 2017 Share Posted August 10, 2017 Can I ask you how it was diagnosed? I'm sorry I see you asked me this yesterday and I haven't been back to the thread. I was diagnosed via laparoscopy. I was undergoing IVF at the time and the doctor had ruled everything else out. Mine was very bad, stage 4. It was never felt during my yearly pelvic exams, and not picked up by preliminary transvaginal ultrasounds either. My OBGYN pooh-poohed me every year when I complained of painful, clotty periods and terrible back pains. 1 Quote Link to comment Share on other sites More sharing options...
Ellie Posted August 10, 2017 Share Posted August 10, 2017 She has had lingering health problems for several years now. She feels somewhat fatigued almost all the time. She doesn't sleep soundly, just "ok." For six months now, she often has severe menstrual pains, but even between her periods -- usually 4-5 days/week, every week. She has been in to see several doctors over the years. They've tested her for so many things. Her iron, vitamin D, and thyroid results are always good. Since her cramps started, they did an ultrasound of her uterus but it was perfect. She does have another appointment with a gynecologist in two weeks. She is 22 and is in college. She has been tested for celiac disease (many years ago she had the celiac biopsy) since she had trouble putting on weight; she has tried the GF diet anyway just to see if it made a difference. It didn't. We do have mild PCOS in our family. She is on birth control pills for severe cystic acne (has been for several years), and it does the trick! We have strong, powerful migraines that run in the family. She gets a migraine headache maybe once/month. I recently started her on B12, magnesium, and vitamin D. I don't know what else to do to help her. Any thoughts or out-of-the-box suggestions are welcome! Bless her heart. :grouphug: :grouphug: :grouphug: When you say that her thyroid results "are always good," can you define "thyroid results" and "good"? Did the doctor only order TSH? Do you know what the result was? To get a true picture of the thyroid function, she needs Free T3 and Free T4. It's probably not a thyroid issue, but you need better labs to really rule it out. 1 Quote Link to comment Share on other sites More sharing options...
Janeway Posted August 10, 2017 Share Posted August 10, 2017 Has she seen a GI doctor? It could easily be a gastro problem. 1 Quote Link to comment Share on other sites More sharing options...
J-rap Posted August 10, 2017 Author Share Posted August 10, 2017 I'm sorry I see you asked me this yesterday and I haven't been back to the thread. I was diagnosed via laparoscopy. I was undergoing IVF at the time and the doctor had ruled everything else out. Mine was very bad, stage 4. It was never felt during my yearly pelvic exams, and not picked up by preliminary transvaginal ultrasounds either. My OBGYN pooh-poohed me every year when I complained of painful, clotty periods and terrible back pains. Oh my, I'm glad it was finally diagnosed! Have you been able to find help for it? Quote Link to comment Share on other sites More sharing options...
J-rap Posted August 10, 2017 Author Share Posted August 10, 2017 Bless her heart. :grouphug: :grouphug: :grouphug: When you say that her thyroid results "are always good," can you define "thyroid results" and "good"? Did the doctor only order TSH? Do you know what the result was? To get a true picture of the thyroid function, she needs Free T3 and Free T4. It's probably not a thyroid issue, but you need better labs to really rule it out. I'll have to check on this. She has two appointments coming up later this month, so we'll get more details. I had thyroid problems myself in my 30's. Quote Link to comment Share on other sites More sharing options...
J-rap Posted August 10, 2017 Author Share Posted August 10, 2017 Has she seen a GI doctor? It could easily be a gastro problem. She did, but not for a number of years now. Quote Link to comment Share on other sites More sharing options...
Ellie Posted August 11, 2017 Share Posted August 11, 2017 I'll have to check on this. She has two appointments coming up later this month, so we'll get more details. I had thyroid problems myself in my 30's. Be aware that most doctors will only test TSH, and that you'll have to insist on the Frees. Quote Link to comment Share on other sites More sharing options...
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