Constant Fatigue, 20 year old female

Posted by plshelpmyfatigue @plshelpmyfatigue, Oct 18, 2017

Hi all! I have suffered from overwhelming fatigue and exhaustion for years; however, over the past six months it has gotten increasingly bad/unmanageable. I sleep 14 hours a night, and I wake up not feeling rested. I drink at least 3 or 4 cups of coffee to stay awake. I was sleeping up to 18-20 hours a day in the beginning of the summer, and if I could do that without life getting in the way (school, friends, etc.) I absolutely would!! It’s been a brutal routine of trying to figure out how to not be exhausted– I’ve completely changed my eating habits (all veggies and protein) as well as working out 4 times a week.

I also have gained 15 pounds, flare up of acne, and random depression, but this could be from recently getting the IUD (which I am taking out soon to rule out any factors). All tests have been normal, except for positive ANAs. I have done tests for Cushing’s, lymes, thyroid, vitamin B levels, PCOS, lupus, etc. They were all normal. I’m just at a complete loss; if anyone had any ideas I would be beyond grateful. 🙂

Liked by swingandamiss

@taterjoy

Dear @plshelpmyfatigue. I am also so very sorry to see what you are going through. Continuing your investigation with the Rheum and sleep study is a great idea. I hope they have answers and solutions. If they are perplexed, you might consider being evaluated at a treatment center with a comprehensive team of specialists who can work together to make a diagnosis and treatment plan. My mom suffered from disabling Fibromyalgia for many years, undiagnosed, because the disease was not yet recognized/known by her physicians in Florida. My Dad flew her to Mayo clinic in Rochester in the 1970’s where she was diagnosed with Fibromyalgia. They provided education, diagnosis info, and a treatment plan and shared it also with her local internist and rheumatologist for follow-up. Her quality of life improved dramatically; now is she 86, with no fibro symptoms, amazingly. 🙂

I hope you will be so fortunate to be healthy again, and feeling great!

About profound fatigue and sleepiness, have your tests included screening for West Nile Virus, Epstein Bar Virus (related to Chronic Fatigue), and Vitamin D deficiency? I have friends with each of those conditions, and none were diagnosed quickly. If you are sleeping a lot and not getting enough sunlight, you may not getting enough natural vitamin D. Also I hope your thyroid tests were comprehensive (not JUST a screen for TSH), as you might have high autoimmune antibodies though the TSH screening can show normal levels.

Maybe the sleep clinic will have ideas on how to alter your sleep patterns with Blue Light or other alternatives. It not be the best option at present, but when you are feeling better, there are some excellent DVDs (short and long) of Qi Gong healing gentle exercises, which include very low impact breathing/movement to improve energy, fatigue, and to heal the body. Many are free on youtube. Let me know if you want me to send you links to specific videos. I hope you will feel better soon, and that if per chance your condition is chronic that it is highly treatable and allows you to function fully.

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Thank you so much for your sympathy and support, it really means the world. I will definitely consider that. I am so glad your mom has improved so dramatically! No tests for West Nile Virus or Epstein Bar virus, but Vitamin D levels were okay! And yes thyroid was TSH, T4, T3, and antibodies( I think). I really hope sleep clinic will show something- since my exhaustion only seems to get worse. I appreciate the exercise advice– I will youtube some!! I appreciate it so much.

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@oldkarl

@taterjoy Hi, friend. Very interesting. Just like you, I have had overwhelming daytime fatigue and sleepiness for many years from about age 10. I snored occasionally, a big loud snort, and anyone around thought a bear was loose in the house and could not get out. Anyway, snoring is always secondary, so it is not snoring you need to worry about. There are many possible underlying causes of snoring and fatigue, and a good sleep study may put you on the track of some of them. Dead and dying Protein deposit diseases, Usually known as the Amyloidosis Family. They deposit bad protein chains in any tissue in the body, and interfere with tissue operating. Nerve, brain, muscle, ligaments, bones, plasma, serum, organs. Almost all persons who have sleep apnea have some form of Amy. It usually appears later in life, but teens and older are susceptible. Have SERUM FreeLiteChain and total daily urine protein tests done. Medicare has been paying for them. Any skin problems where the skin looks like it has been plowed one way, and then a cross-furrow at a 45 degree angle? or black spots on your toes or around your eyelids?
2nd, Diabetes. 3rd, asthma. 4th, environmental, such as radon, Round-Up. Household chemicals? Do you live near a chemical plant, dry cleaners, oil refinery, freeway, airport? 5. Have you had concussions or other brain or nerve or head injuries? How is your voice? Changing any? Raspy? Any x-rays of your lungs, heart, jaw, thyroid, goiter? Nodules on your airway or esophagus? Do you bruise easily? Any broken bones? Dental care needs? Eye problems? Kidney or urinary tract issues that could spread inflammation? See what I mean? There are many possible causes, and you just must keep sorting them out, and do not let some tin-horn doctor try to protect the disorder from the patient’s medical care which you need.

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Hi! Thank you so much for your post. Thank you for sharing this information- I have never heard of that! I will talk to my doctor about this- definitely worth trying. No skin problems plowed one way, or black spots. I have had glucose levels done, so no diabetes. No environmental causes, since I have moved a bunch and the problem persists. I have had two concussions, the recent one in the Spring, but CT scan and MRi was normal, and I went through concussion therapy. No x rays of lungs/ heart/ jaw / etc. No broken bones– but I definitely bruise easily. No dental care, eye, or kidney tract issues. But thank you so much for asking all these questions– most doctors don’t and just ignore me! I really appreciate it. The support means the world!

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Hi everyone– had my rheumatologist appointment and wanted to update! IUD has been out for two weeks and weight gain/ acne has persisted (even increased), even though they put me on Yaz which is suppose to specifically help w acne.

Rheumatologist was wonderful and actually listened– such a nice change of pace. he thinks I have narcolepsy and I am getting a sleep study on the 1st. he also did more autoimmune tests (more lupus, etc.) as well as measuring protein in urine (once it was high) as well as more tests for anemia.

SO happy to finally have someone listen and acknowledge something is off/ wanting to help and look; however, I’m still convinced this is endochronological due to the acne/ weight gain/ temp weirdness/ fatigue/ vision blurry/ mental fog. Mainly the acne and weight gain is the most prominent endocrinology wise.

I’ve done tests for TSH, T3, T4 twice, but hypo thyroid seems so similar to my symptoms. Is it worth during reverse T3 or is that not worth it? Any other suggestions? He didn’t think scans were necessary/ wasn’t sure how to advise me on endocrinologist front. I tested negative for Cushing’s (spit test) which also would have made a lot of sense.

I cannot thank you all enough for the support. I had no idea I would get such caring and thorough responses– truly warms my heart and I am so grateful.

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plshelpmyfatique, It is wonderful that you have found a very engaged and caring rheumatologist! I hope he can expedite your sleep study to find out about narcolepsy or other sleep issues. You mentioned acne and weight gain, which rang a bell. Have you been evaluated for Polycystic Ovarian Syndrome (POS)? It is an endocrine disorder that can cause weight gain, acne, hirsutism (excess hair), menstrual issues, and a whole host of other symptoms. I was diagnosed at age 19, and was told to lose 5-10 pounds to “control” the POS symptoms. With the help of a high fiber and hypoglycemic diet–I lost the weight and the excess hair on my fingers, toes, back and stomach; my acne gradually disappeared. However, I continued to have terrible “hormonal” migraines cyclically, and after many years, they began occurring daily.

Seeking help for the daily headaches, I was eventually diagnosed with hashimotos thyroiditis with Hypothyroidism by an endocrinologist (can also cause symptoms such as weight gain. tiredness, dry skin, depression and possibly other symptoms, if untreated). My gynecologist and internist had noted before this diagnosis, that my TSH was slightly elevated, but did not feel the need to treat it. I paid out of pocket to see the endocrinologist who did the Antigen tests (both lab results were extremely HIGH). He immediately prescribed Synthroid, and worked closely with me for months to titrate to an effective dose. My “chronic” headaches became less intense and less frequent. My tiredness resolved, and the awful “fluid retention” and carpal tunnel syndrome resolved. I don’t recall if the T3 and T4 tests were done by my “regular” MDs prior to seeing the Endo.

About your “normal” TSH, T3, T4: I don’t know anything about the “reverse T3” test. I’m guessing your MD’s as of yet, have not felt it necessary to test for Thyroid Antigens (which are tests for autoimmune thyroiditis, which CAN look similar to hypothyroidism even if TSH is normal). I hope this Rheumatologist will consider sending you for a consultation with an Endocrinologist who can investigate not only thyroid function, but also functioning of the pituitary gland and other endocrine systems. Hoping your health will soon be improving by leaps and bounds!

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@taterjoy

plshelpmyfatique, It is wonderful that you have found a very engaged and caring rheumatologist! I hope he can expedite your sleep study to find out about narcolepsy or other sleep issues. You mentioned acne and weight gain, which rang a bell. Have you been evaluated for Polycystic Ovarian Syndrome (POS)? It is an endocrine disorder that can cause weight gain, acne, hirsutism (excess hair), menstrual issues, and a whole host of other symptoms. I was diagnosed at age 19, and was told to lose 5-10 pounds to “control” the POS symptoms. With the help of a high fiber and hypoglycemic diet–I lost the weight and the excess hair on my fingers, toes, back and stomach; my acne gradually disappeared. However, I continued to have terrible “hormonal” migraines cyclically, and after many years, they began occurring daily.

Seeking help for the daily headaches, I was eventually diagnosed with hashimotos thyroiditis with Hypothyroidism by an endocrinologist (can also cause symptoms such as weight gain. tiredness, dry skin, depression and possibly other symptoms, if untreated). My gynecologist and internist had noted before this diagnosis, that my TSH was slightly elevated, but did not feel the need to treat it. I paid out of pocket to see the endocrinologist who did the Antigen tests (both lab results were extremely HIGH). He immediately prescribed Synthroid, and worked closely with me for months to titrate to an effective dose. My “chronic” headaches became less intense and less frequent. My tiredness resolved, and the awful “fluid retention” and carpal tunnel syndrome resolved. I don’t recall if the T3 and T4 tests were done by my “regular” MDs prior to seeing the Endo.

About your “normal” TSH, T3, T4: I don’t know anything about the “reverse T3” test. I’m guessing your MD’s as of yet, have not felt it necessary to test for Thyroid Antigens (which are tests for autoimmune thyroiditis, which CAN look similar to hypothyroidism even if TSH is normal). I hope this Rheumatologist will consider sending you for a consultation with an Endocrinologist who can investigate not only thyroid function, but also functioning of the pituitary gland and other endocrine systems. Hoping your health will soon be improving by leaps and bounds!

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@taterjoy Thank you so so much for the quick reply!!! I really hope this doctor helps too.

So sorry to hear about your struggle with PCOS- my sister has it, and I know it’s not an easy road. They tested me, and I was normal. Also very sorry to hear about your issues with hashimotos thyroiditis, but I”m so glad a lot of your issues have been resolved! I have all of those symptoms as well that you listed (weight gain, tiredness, dry skin, etc.) which is why I find it so odd that my TSH, T4, and T3 levels are normal. I was tested for TPO along with T4, T3, and TSh, but that was it. I have seen two endocrinologists now and both didn’t think it was thyroid problems based on those normal tests. Maybe I will have this rheumatologist recommend me to another one (or maybe I can see if he’s willing to test me for other thyroid tests other then T4, T3, and TSH since those are very standard).

Thank you again!

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Hi everyone, I just wanted to give an update since you were all so helpful and kind, especially since this could help some of your own diagnosis! I went to a new doctor who is wonderful and redid all my tests– my C reactive protein was very high (inflammation), my TPO was high, and my TSH was high!! That coupled with the positive ANA absolutely points to Hashimoto’s, which makes COMPLETE sense. I have no idea why this hasn’t shown up in tests before (I have read that it takes a while for hashimoto’s to show up in blood tests), but I am going to see a thyroid specialist soon. I pray he puts me on medication so I can function normally again!!! Thank you all again, I’m hoping this is the end of the road of this nightmare!

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FANTASTIC! It is so wonderful that you found a physician who did a comprehensive set of tests, and exams. Glory Hallelujah! The results are not surprising, and I hope you are reassured to know your diagnosis now, and that effective treat is available. I hope your symptoms will start clearing up as you begin thyroid medications, and hope your appointment with the ENDO can be expedited. The day after I began taking levothyroxine (Synthroid) I finally experienced relief from a daily headache, occurring for three years! In a few weeks after beginning Synthroid, my skin normalized, energy returned, fluid accumulation (and carpal tunnel syndrome) remitted, and hair/nails improved. I pray that you will feel SO much better soon. Thank you for sharing your experience, @plshelpmyfatigue You are on your way to recovery!!! Happy Holidays!

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@taterjoy

FANTASTIC! It is so wonderful that you found a physician who did a comprehensive set of tests, and exams. Glory Hallelujah! The results are not surprising, and I hope you are reassured to know your diagnosis now, and that effective treat is available. I hope your symptoms will start clearing up as you begin thyroid medications, and hope your appointment with the ENDO can be expedited. The day after I began taking levothyroxine (Synthroid) I finally experienced relief from a daily headache, occurring for three years! In a few weeks after beginning Synthroid, my skin normalized, energy returned, fluid accumulation (and carpal tunnel syndrome) remitted, and hair/nails improved. I pray that you will feel SO much better soon. Thank you for sharing your experience, @plshelpmyfatigue You are on your way to recovery!!! Happy Holidays!

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@taterjoy Thank you so much for that lovely message!!! Happy holidays to you!!!! I really appreciate it. Enjoy the weekend!!

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@plshelpmyfatigue

Hi everyone, I just wanted to give an update since you were all so helpful and kind, especially since this could help some of your own diagnosis! I went to a new doctor who is wonderful and redid all my tests– my C reactive protein was very high (inflammation), my TPO was high, and my TSH was high!! That coupled with the positive ANA absolutely points to Hashimoto’s, which makes COMPLETE sense. I have no idea why this hasn’t shown up in tests before (I have read that it takes a while for hashimoto’s to show up in blood tests), but I am going to see a thyroid specialist soon. I pray he puts me on medication so I can function normally again!!! Thank you all again, I’m hoping this is the end of the road of this nightmare!

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Thank you for the update @plshelpmyfatigue. That is great news.

John

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I went to an integrated MD and was diagnosed EBV, mycoplasma, Lyme( my regular internist did blood work and it was all negative), and a host of other coinfections.

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I would recommend concentrating on your gut health. Over the past 9 years I've seen so many people recover from chronic fatigue through removing bad stuff from their diets. Each person seems to be a little different, but the following is a summary of what people have reported that worked for them. The key was that it was generally something that they really enjoyed or craved that caused the most problems. The big ones have been sugar (soda, candy, milk chocolates), dairy, bread ( most grains), nightshades (tomatoes, pepper, chili). I'd recommend reading up on leaky gut. Essential oils have also been a good thing for some people, but this seems more in the healing rather than the cause side. Remove the cause and the gut will heal.

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A big shout out to remove GMO foods. Since going all Organic, my health and fitness has rapidly improved.

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@johnbishop

Hello @plshelpmyfatigue,

Welcome to Connect. I’m hoping you can meet other Connect members who have similar health concerns and learn what they are doing for treatments.

Since you mentioned having a positive ANA, I’d like to start by introducing you to a few members with very similar conditions. Please meet @cmtg, @pinkmk, @aman_23_23, @mommaj, @tljam, @whitechinacat, @palscoreen, @terryblink, @pinkstar, @rebo, @v1crew, @jewel8888, @tbeckys, @WendyAnne, @559purplepatty, @atorset, @beff2468, @taterjoy, @kanaazpereira, @lisabeans, @wottone, who I’m hoping can offer some information that may help.

You may also want to take a look at the following discussions:
– Undiagnosed auto immune disease: https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/
– Autoimmune Diseases and Fatigue: https://connect.mayoclinic.org/discussion/autoimmune-diseases-and-fatigue/
– What happens when you have a disease doctors can’t diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with
myalgic encephalomyelitis, commonly known as chronic fatigue syndrome:
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose?utm_source=tedcomshare&utm_medium=email&utm_campaign=tedspread
@plshelpmyfatigue have you received any diagnosis from your doctor?

John

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@plshelpmyfatigue

One of the required symptoms of the neuroimmune disease Myalgic Encephalomyelitis ("Chronic Fatigue Syndrome") is "post-exertional malaise". That is, a worsening of disease symptoms (often delayed 12-48 hours) following physical or mental exertion. Other similar disabling illnesses do not have post-exertional malaise, and so this symptom is often used to distinguish ME.

For those with ME, trying to exercise beyond available energy can worsen symptoms dramatically for hours or days (causing a "crash" or "relapse"). That is, trying to exercise too much makes ME worse.

For severe ME patients (who are generally bedridden), even "mundane" tasks such as taking a shower or preparing a simple meal can trigger a crash. For mild ME patients, some light exercise and stretching every day can be beneficial. But part of the management of ME is knowing your energy limit, and consistently keeping exertion below the level where it triggers a crash.

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