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Completely Exhausted - Again! What is THIS?***Update post 89***

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  • #61
    shiloh, best of luck as you deal with all this. I agree with the couple of posters who suggested seeing a DO instead of an MD, especially for a primary care doc. I really miss my Colorado DO family practice guy.

    Rebecca

    Comment


    • #62
      Have you looked into Myalgic Encephalomyelitis? May times it is lumped in with CFS,but some insist it is a separate disease.

      https://rarediseases.org/rare-diseas...phalomyelitis/

      https://www.cdc.gov/me-cfs/symptoms-.../symptoms.html

      And here's an info/support page I stumbled on while looking for something else.

      https://phoenixrising.me/

      Comment


      • #63
        Shiloh, have you tried a liver cleanse? I use a powdered organic superfood that contains milkweed thistle that I bought on Amazon, and it has done wonders for me. The liver has to metabolize your thyroid meds and HRT plus all the other foods and chemicals you’re exposed to. Mine must have lost some of its efficiency due to my age :-)

        I also use a high-quality whole food vitamin and a separate mineral supplement. HRT can deplete vitamins and minerals—most notably magnesium—which could be contributing to your sleep problems.

        I have a rash of sorts called granuloma annulare which seems to flare less when I use my superfood powder. I also had non-symptomatic thyroid nodules which have now gone away. One nodule was complex—partially cystic and partially solid. I had that one ablated but the other ones have either gone away or are too small for me to feel. My neck circumference looks smaller, too.

        If you decide to do a cleanse, start slowly. You may feel slightly worse before you feel better. Please check with your doctor first, too.

        Best wishes to you and everyone who isn’t feeling well. I hope you can get some answers and relief!



        Comment


        • #64
          Your symptoms have chronic Lyme written all over it. Problem is, the CDC does not recognize it exist, so doctors cannot legally treat you for it. There are many doctors who will treat it under the radar. You just have to find them. I recently was lucky enough to be bitten by a tick and be able to show the bullseye rash to my doctor. This allowed him to treat me with Doxy for a current Lyme infection. I was not able to take the Doxy since it made me sick to my stomach, so I am now on Amoxicyline which is the good stuff for treating chronic infections. I'm already started to require less sleep after taking it for 4 days.
          "Do what you can't do"

          Comment

          • Original Poster

            #65
            Update: So I have appts with endocrinologist on 10/2, dermatologist on 9/20 and the appt with the surgeon is still pending. And I saw my ob/gyn doc and he added some more labs to the ones I need to have drawn. I waited til I saw him because I only want to get poked once thanks.

            Still tired - came home today and decided to take a quick nap. HA! Head hit pillow at noon and I was asleep until 4p. Wasted day...

            I am going to ask endo guy about chronic Lyme because all along I have suspected and still do suspect this is what I have. Been doing my research on Epstein-Barr and mono and I still don't know whether I want to be mad they didn't tell me of a positive finding so at least I could expect what's happening to me or what. Sticking with annoyed right now because that's what's driving me.
            "Cats aren't clean; they're covered with cat spit."
            - John S Nichols (1745-1846,writer/printer)

            Don't come for me - I didn't send for you.

            Comment


            • #66
              Originally posted by shiloh View Post
              Update: So I have appts with endocrinologist on 10/2, dermatologist on 9/20 and the appt with the surgeon is still pending. And I saw my ob/gyn doc and he added some more labs to the ones I need to have drawn. I waited til I saw him because I only want to get poked once thanks.

              Still tired - came home today and decided to take a quick nap. HA! Head hit pillow at noon and I was asleep until 4p. Wasted day...

              I am going to ask endo guy about chronic Lyme because all along I have suspected and still do suspect this is what I have. Been doing my research on Epstein-Barr and mono and I still don't know whether I want to be mad they didn't tell me of a positive finding so at least I could expect what's happening to me or what. Sticking with annoyed right now because that's what's driving me.
              I hope and pray you get some answers. Shiloh, since I first read your thread here, I too thought Lyme.
              What I want to know is how in the HELL the CDC says it does not exist. Insane.
              (((HUGS))))

              Comment


              • #67
                Originally posted by Sannois View Post

                I hope and pray you get some answers. Shiloh, since I first read your thread here, I too thought Lyme.
                What I want to know is how in the HELL the CDC says it does not exist. Insane.
                (((HUGS))))
                My understanding is, it is due to the blood tests being so expensive and the sheer number of affected people is simply an insurance company profit buster. It's more an issue of insurance lobby buying off Washington than about patient care. Also that little thing about Lyme most likely being a man made disease never looks good.

                OP, if you do get the brush off about Lyme, Monolaurin and some other natural remedies exist to kill off the infection.
                "Do what you can't do"

                Comment


                • #68
                  any diagnosis ?

                  feeling any better ?

                  did i miss something ... ?

                  Jingles & AO ~
                  Last edited by Zu Zu; Oct. 30, 2018, 12:23 AM.
                  Zu Zu Bailey " IT'S A WONDERFUL LIFE ! "

                  Comment

                  • Original Poster

                    #69
                    No you didn't miss anything - I just have not posted. LSS, they want me to take MORE blood tests, this time very thyroid specific. The want to rule out Hashimotos. Also need to get another ultrasound of thyroid itself. turns out it's cysts on the thyroid lymph glands and he wants to see if they have changed any.

                    Also, was doing some reading. A very interesting article in Mother Earth Living about a woman who has chronic fatigue. I thought I would just skim the article but a couple things caught my eye and I wound up reading the whole thing and then bursting into tears. Every. Single. Symptom listed I have. I had blown off some of them as just having to do with my age and my anxiety but no they are part and parcel of the disease. So I have a nasty feeling I am in initial stages. And I am not one of those people who read medical articles and go Ack I have that. I am a scoffer if anything. So that's been on my mind and along with the other stressors in my life, I feel more exhausted than ever, while pretending not to be. And pretending I am not completely anxious and depressed.

                    Thank you Zuzu for asking - I raise an avocado sammich to you.
                    "Cats aren't clean; they're covered with cat spit."
                    - John S Nichols (1745-1846,writer/printer)

                    Don't come for me - I didn't send for you.

                    Comment


                    • #70
                      Originally posted by shiloh View Post
                      Thank you Zuzu for asking - I raise an avocado sammich to you.
                      Dont encourage her!!!!!


                      Geez...that's makes what, 3-4 of us on here that have growths on our thyroid a now?

                      I'm going through a bunch of tests as well so I feel for you.

                      Did you check out Big Mama's thyroid thread? Color of Light has a ton of experience and knowledge to offer.

                      ETA: Oops, I take that last question back...I see that you have contributed to that thread.
                      Mean Girls grow up to be Mean Women

                      Comment


                      • #71
                        I'm so sorry .... I hope you're wrong on your reading ideas ... AO ... very tough to be I know
                        especially when you're exhausted and worried sick with stress.


                        You've heard it before ... try your best to take care of yourself during this hellish time period
                        extra rest
                        extra kindness for your heart
                        extra cat time

                        please know you're in my thoughts and prayers ~

                        ((hugs)) laced with strength and patience ~
                        Last edited by Zu Zu; Oct. 30, 2018, 09:35 AM. Reason: spelling goof yet again ... slooow down me !
                        Zu Zu Bailey " IT'S A WONDERFUL LIFE ! "

                        Comment


                        • #72
                          I'm so sorry you're going through all this. Trying to find a diagnosis can be so frustrating and compounded by the fact that if that can't see it in black and white, what we feel is seemingly considered irrelevant.

                          I hope you get some answers soon and it's not what you think you have.

                          Lots of jingles for you!!

                          Take all the naps you need, hopefully soon you won't need as many!

                          Comment


                          • #73
                            Originally posted by tbchick84 View Post

                            My understanding is, it is due to the blood tests being so expensive and the sheer number of affected people is simply an insurance company profit buster. It's more an issue of insurance lobby buying off Washington than about patient care. Also that little thing about Lyme most likely being a man made disease never looks good.

                            OP, if you do get the brush off about Lyme, Monolaurin and some other natural remedies exist to kill off the infection.
                            They recognize Lyme disease. Chronic Lyme however is different. They call it post treatment Lyme disease. Heck I remember reading here that chronic Lyme isn’t a thing.

                            Shilo have you been tested and treated for Lyme before? It does sound like Lyme, so ask for a titter. Don’t use the term chronic Lyme. If you are not in an area familiar with it, docs insist upon no rash=no Lyme and that flair ups can’t happen. Docs were like this in Connecticut too way back.
                            http://theotherboard.boards.net/ An OT forum for CoTHers to give our dear Mods a break

                            Comment

                            • Original Poster

                              #74
                              Denali6298 - have been tested for Lyme multiple times. And my hospital has one of the better tests. But they keep telling me it's negative. But after having been bitten more times than I care to count by ticks, I think the likelihood is probably fairly strong that I have it. Especially after the bite I got last year at about this time that I had a horrible allergic reaction to, including a rash that would not quit. arrgghh - so very frustrated.

                              Thanks for caring guys...….it perks me up to read your ideas and kind thoughts. Now instead of running errands I am going to take a nap. Is there a yawn icon?
                              "Cats aren't clean; they're covered with cat spit."
                              - John S Nichols (1745-1846,writer/printer)

                              Don't come for me - I didn't send for you.

                              Comment


                              • #75
                                OP- I think there are people that test negative for Lyme but have it. Three different times over about 6 or 7 years my husband had all the symptoms of Lyme but tested negative. Doctor treated him with doxy for 30 days anyway. The symptoms disappear and stay away for a few years. We are in a high exposure area and he does a lot outside so lots of opportunites to get ticks.
                                Oh, well, clearly you're not thoroughly indoctrinated to COTH yet, because finger pointing and drawing conclusions are the cornerstones of this great online community. (Tidy Rabbit)

                                Comment


                                • #76
                                  Originally posted by shiloh View Post
                                  No you didn't miss anything - I just have not posted. LSS, they want me to take MORE blood tests, this time very thyroid specific. The want to rule out Hashimotos. Also need to get another ultrasound of thyroid itself. turns out it's cysts on the thyroid lymph glands and he wants to see if they have changed any.

                                  Also, was doing some reading. A very interesting article in Mother Earth Living about a woman who has chronic fatigue. I thought I would just skim the article but a couple things caught my eye and I wound up reading the whole thing and then bursting into tears. Every. Single. Symptom listed I have. I had blown off some of them as just having to do with my age and my anxiety but no they are part and parcel of the disease. So I have a nasty feeling I am in initial stages. And I am not one of those people who read medical articles and go Ack I have that. I am a scoffer if anything. So that's been on my mind and along with the other stressors in my life, I feel more exhausted than ever, while pretending not to be. And pretending I am not completely anxious and depressed.

                                  Thank you Zuzu for asking - I raise an avocado sammich to you.
                                  My friend has Hashimotos. It sucks though, because they have not done anything to help her. She is on Lyrica and Cymbalta and still has bad flares and had to go down to working part time as a nurse. She is pursuing a 2nd opinion with Mayo though- as she has more bad days than good and is not satisfied with where she is at.

                                  I have a plethora of symptoms myself but no one has ever strung them all together under a tidy diagnosis. I suspect sometimes that isn't possible and the best thing that can be done is to treat symptoms and try to get the best quality of life possible. My ongoing saga includes: fatigue/exhaustion, likely due to chronic insomnia (mostly controlled), headaches, low back pain and right elbow pain, chronic bladder infections (due to past surgeries), anxiety and depression (manageable most days) and of course- being peri-menopausal. Some days I feel great, some days I feel like crud. It often depends on how I sleep and hormonal balances. I try to walk daily and ride a few times a week but some days are a struggle. I find I need a lot of down time but too much isn't good either. Being a step parent has been a struggle over the years too and I have lots of impending work changes- i.e. stress coming up too. thankfully, both kids are grown and out of the house so that does help.

                                  I hope you can get a handle on your symptoms just to feel better. I often wonder WHY so many people, especially women- feel so horrible these days. I am in a profession where I see lots of medical records and there are way too many people on way too many medications. I don't know if that is indicative of something going on in our society or what. But you are definitely not alone.

                                  Comment

                                  • Original Poster

                                    #77
                                    Originally posted by TWH Girl View Post
                                    I hope you can get a handle on your symptoms just to feel better. I often wonder WHY so many people, especially women- feel so horrible these days. I am in a profession where I see lots of medical records and there are way too many people on way too many medications. I don't know if that is indicative of something going on in our society or what. But you are definitely not alone.
                                    Thank you for that thought. In my work in the ER I too saw many people on boatloads of meds and often wondered how much of it was really necessary. And yes, especially women. It seems there's a pill for everything these days plus some. I think that maybe in days gone by people were more stoic - no crying, no complaining, no charity - just suck it up. To be otherwise was seen as being weak. Are we weaker or just more vocal now? I wish that they would stop just throwing pills at people and really look at them. I don't want to be fobbed off - I want to feel well and able like I used to. Yes, age has limitations and I get that, but I don't want to be tired to the point of weepiness and I certainly don't want to spend the rest of my life in bed watching the world pass me by.
                                    "Cats aren't clean; they're covered with cat spit."
                                    - John S Nichols (1745-1846,writer/printer)

                                    Don't come for me - I didn't send for you.

                                    Comment


                                    • #78
                                      Shilo I totally agree. The pill can be just as bad as what they are supposed to help!
                                      How are you? You are always posting on my thread, I had forgotten you are dealing with your own issues.

                                      Comment


                                      • #79
                                        Shiloh, I've personally come to prefer going to a DO vs MD for my primary healthcare. I do believe they are better at taking a 'whole body' approach to medicine rather than looking at individual body parts.

                                        Yes, I do take meds but I've never felt that any of them were just "throwing pills at a potential problem".

                                        I know that I'll never be a "normal" able-bodied person again. Meds help me manage the less than abled parts No, ATM, no pain meds and no "emotional health" meds (whatever you want to call them). My DO's (past and present) have never suggested a med without a reason and I've always felt comfortable talking about the wisdom of meds and what makes the most sense.

                                        Sometimes, if the patient, IMO, "complains" fairly consistently I wouldn't be surprised if some healthcare professionals do just "push pills" to keep the patient happy. Sometimes they are in a tough spot and, IMO, the patient does bear some responsibility. IMO, it also doesn't help that magazines, TVs, internet are full of medication advertising which educates the viewer, sometimes negatively (which is kinda what the advertiser is hoping for).

                                        Only you, the individual, know where that fine line is between over medication and quality of life and it will be different for every person. If you feel like you're getting meds pushed on you, maybe look for a different healthcare professional? I also agree, as you noted, as we age, our bodies make us evaluate our quality of life and sometimes that line moves. I personally don't think it is "bad" to take meds to make your qualify of life something that you enjoy. Maybe they won't help you get younger but they can help you get out and enjoy things.

                                        If you see your glass as half empty, pour it into a smaller glass and stop b*tching

                                        Comment


                                        • #80
                                          OP - I am so sorry you are going through this. It is so frustrating to have something impact your quality of life to such a degree, with no clear answers.

                                          I'm going to go out on a ledge here and sound super woo-woo. And I am NOT a woo-woo person, or someone who is into the popular fix of the week. But so much of what you have said about fatigue really resonated with me. For years (ok, pretty much my entire life) I have felt EXHAUSTED. Like, literally dragging myself through the day. I sleep an average 10 hours per night, 12 on weekends. I used to need 2-3 hour naps on the weekends. Tons of coffee. And doctors ran every test imaginable on me. They always came back totally within normal limits. I'm totally within normal body weight. Normal BMI, no issues with cholesterol, have the resting heartrate of an athlete (even though I do nothing) and have low blood pressure. Yet I felt unrelenting fatigue. My only health issue was a auto-immune GI disease that has been a fairly recent issue in my life.

                                          This spring, I had a hiatus from riding and put on a few pounds. My cousin had transformative success doing the keto diet, so I was curious and asked her for a few tips. I decided to give it a shot. And honestly, the health results have been nothing short of miraculous for me. My GI flareups went away completely, 100%. No medication needed. But what has really been astounding are my energy levels. I have struggled my whole life with feeling exhausted, dragging myself through every day - especially afternoons. Now, I have plenty of energy and never feel that bone-tired feeling.

                                          Again, I am really not one of those people that embraces 'fad' diets or unscientific stuff. But eating "keto" has seriously changed my life. I just thought I would share it with you, as so much of what you say, I can identify with.

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