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  • Can anyone shed light on this (?)

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    Old 05-11-2005, 01:25 PM   #1
    ukiahvalleymom
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    Can anyone shed light on this (?)

    Hi, everyone,
    I have been posting on the Fibromyalgia, since having been dx'd with that a year ago. My symptoms changed recently to include:
    Abdominal pain and tenderness (started about 4-5 weeks ago)
    Back pain, bone and joint pain
    Pigmentation of skin change (noticed a couple of months ago)
    Nausea
    Upset stomach
    Fatigue (different then FMS)
    Weakness
    Headaches
    Dizziness when standing up
    Eyes: milky, ill looking, w/dark bags and lines under
    Color was almost jaundice a week ago now very pale
    Low Blood Pressure has always been a struggle
    Low Tempature: 96.3-96.7 very rarily is it in the 97.'s
    No Appetite, (I am eating,tho)
    Dehydrated
    White tongue
    Dry mouth and eyes
    Extreme Weight Loss, 10 lbs in the last 2 weeks, over 20 lbs in the last 2 months without trying.

    I have been on a low dose of Cortisol since December '04 and started Heparin treatment the middle of March. Due to my trip to the ER last week, I am off the Heparin for now.

    I have been struggling eating and taking my meds and supplements since I started feeling ill, about 10 days ago its like I have to force myself.

    An interesting note is that I had been dx'd with a compromised immune system, and cellular level viruses: HHV6, CMV, Mycoplasma Pneumonia, and Candida, two of which are noted under the Addison's Disease. Also FMS causes malfunctions in the CNS and ANS. (by Dr Kent Holtorf, FMS & Fatigue Specialist in Torrance, CA)

    I ended up in the ER last Wednesday with the above symptoms and blood found in my urine, where the doctor and my pcp doctor just contibuted the dx of Hematuria (blood in the urine) to the Heparin treatment. All they did was a clean test to verify that there was blood, noted my coloring and excused all of the other symptoms, yet a week later, I'm feeling all the listed symptoms still???

    I had to push for this...got it tho...so...
    Tomorrow I will have a CT scan of my abdomen, I really feel that there is something other than the usual symptoms of FMS going on, and I have missed a week of work. This is unusual...for me.

    uvm

     
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    Old 05-17-2005, 01:12 PM   #2
    Keraly
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    Re: Can anyone shed light on this (?)

    Dear Ukiahvalleymom:

    You sound like a textbook case of Addison's Disease! The dizziness is refered to as postural hypotension (very common with Addison's). The dark circles can be and probably ARE a sign of dehydration or salt wasting. This is what I'd ask for to cut to the chase:

    Blood test for aldosterone level, renin, sodium, potassium, ACTH plasma level, sodium level in urine (if possible, to evidence salt wasting). Try to secure an ACTH stimulation test ASAP (may ask you to wait, as you've been on the cortisol). The dark skin suggests HIGH ACTH in plasma; it's high to attempt to ask your adrenals to make more cortisol. This is life threatening, as I'm sure you must know. You should probably look up the signs of adrenal crisis on the medical sites, as well. Wish I was versed enough to site them. SOME are: vomiting, nausea, lower back pain, LOW blood pressure, weakness, fever (at times); passing out.

    Please seek help quickly! ~ Tracy

     
    Old 11-19-2005, 11:28 PM   #3
    ukiahvalleymom
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    Re: Can anyone shed light on this (?)

    Quote:
    Originally Posted by Keraly
    Dear Ukiahvalleymom:

    You sound like a textbook case of Addison's Disease! The dizziness is refered to as postural hypotension (very common with Addison's). The dark circles can be and probably ARE a sign of dehydration or salt wasting. This is what I'd ask for to cut to the chase:

    Blood test for aldosterone level, renin, sodium, potassium, ACTH plasma level, sodium level in urine (if possible, to evidence salt wasting). Try to secure an ACTH stimulation test ASAP (may ask you to wait, as you've been on the cortisol). The dark skin suggests HIGH ACTH in plasma; it's high to attempt to ask your adrenals to make more cortisol. This is life threatening, as I'm sure you must know. You should probably look up the signs of adrenal crisis on the medical sites, as well. Wish I was versed enough to site them. SOME are: vomiting, nausea, lower back pain, LOW blood pressure, weakness, fever (at times); passing out.

    Please seek help quickly! ~ Tracy
    Thank you, sure hope you're still here....
    There has been blood work drawn for CBC, CMC and urinalysis done at the hospital, decided to have reports sent to both my pcp and my Fibro and Fatigue specialist; Dr Holtorf.

    My husband took me to my pcp two days later...my blood pressure was 80/50, temp 96.2, my doctor did nothing and sent me home...I could barily stand up...my husband was so scared, he thought this was it!

    On the Monday, Dr Holtorf checked on me, and went over the results of the Lab work with me, listened to my symptoms and immediatly called in a prescription for Fludrocortizone, Hydrocortizone, and Toprol, I had already been taking a low dose of natural hormone Cortisol, since Dec '04. He also put me on medical leave from work.

    Yes, I was in an Adrenal crisis, dx with Hypotension as well...it took 8 weeks to begin to feel good again, I'm sorry I never saw this post...I made a mistake and went back to work the end of July...in the first week symptoms started to worsen. Within 4 weeks, I was too ill to work, blood pressure and temp dropped along with all the other symptoms again...can't afford to loose any more weight or let my body shut down again...back on medical leave.

    To get you caught up, it has now been 13 more weeks, I do have good news if you have followed my posts on Fibromyalgia, Chronic Fatigue, or Environmental Illnesses or (Issues)???

    I am back on the mend, started feeling much better after about 8 weeks of treatment, staying our of the office and rest. Much more improvement over the last 2 weeks of treatment. Have gained 12lbs so far.

    Back to exercising! Haven't been able to workout since the March of '04, (really since November of '03) Did not go back to work, still on medical leave, but feeling great!!

    uvm

     
    Old 11-21-2005, 07:43 AM   #4
    Keraly
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    Re: Can anyone shed light on this (?)

    TERRIFIC news!!!

    Of course, I send my condoslences for the news about your adrenal crisis! But I AM so happy that you are doing much better! Sorry I haven't been on the board for a while. Was temperarily banned for sharing some info in an incorrect manner. Am not sure which; I try hard to stay within the confines of the rules of the board. But I guess things didn't work out on one occasion.

    Anyway, back to the pertinent -- HOORAY for you! I hope your meds continue to do the job for you. Remember to speak to your doctor about increasing meds as needed for situations when you face stress of an emotional OR physical nature (illness, heartache, loss or mourning, physical exertion beyond the norm for you, i.e. moving to a new house without the aid of movers, etc.).

    Another helpful suggestion is to keep a routine, if possible. Since you take a set, calibrated dose of cortisol to fit your EVERY DAY needs, except on occasions when you need to temporarily increase it, wide variance of sleep schedule or amount of activity can upset your system. This is unlike my son, who has Diabetes. He varries his insulin intake depending upon how many calories or carbohydrates he is preparing to ingest! I've heard from those who have lived with Addison's for a long time that the most effective way to achieve wellness is to keep as much of a routine as possible, and increase exercise very gradually! For times of severe stress of any kind, your doctor may advise you to increase your dose for a few days to equip you to handle it. Also, check into carrying an emergency injection of "solu-cortef" for any shocking or taxing situation (auto accident, etc.) that might necessitate an emergency dose of cortisol which is stronger than your daily dose. Your doctor should also supply you with a letter explaining your diagnosis and proper emergency care to give to paramedics or ER staff, if needed. Many emergency room personell and even doctors are painfully unaware of how to properly respond to an Addisonian in distress of any kind! Perhaps all of this may have been old news to you! If so, sorry to go through it all! BEST OF HEALTH FOR THE NEW YEAR!! And congratulations on obtaining your diagnosis! ~ Tracy

     
    Old 11-21-2005, 08:35 AM   #5
    ukiahvalleymom
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    Re: Can anyone shed light on this (?)

    Quote:
    Originally Posted by Keraly
    TERRIFIC news!!!

    Of course, I send my condoslences for the news about your adrenal crisis! But I AM so happy that you are doing much better! Sorry I haven't been on the board for a while. Was temperarily banned for sharing some info in an incorrect manner. Am not sure which; I try hard to stay within the confines of the rules of the board. But I guess things didn't work out on one occasion.

    Anyway, back to the pertinent -- HOORAY for you! I hope your meds continue to do the job for you. Remember to speak to your doctor about increasing meds as needed for situations when you face stress of an emotional OR physical nature (illness, heartache, loss or mourning, physical exertion beyond the norm for you, i.e. moving to a new house without the aid of movers, etc.).


    Another helpful suggestion is to keep a routine, if possible. Since you take a set, calibrated dose of cortisol to fit your EVERY DAY needs, except on occasions when you need to temporarily increase it, wide variance of sleep schedule or amount of activity can upset your system. This is unlike my son, who has Diabetes. He varries his insulin intake depending upon how many calories or carbohydrates he is preparing to ingest! I've heard from those who have lived with Addison's for a long time that the most effective way to achieve wellness is to keep as much of a routine as possible, and increase exercise very gradually! For times of severe stress of any kind, your doctor may advise you to increase your dose for a few days to equip you to handle it. Also, check into carrying an emergency injection of "solu-cortef" for any shocking or taxing situation (auto accident, etc.) that might necessitate an emergency dose of cortisol which is stronger than your daily dose. Your doctor should also supply you with a letter explaining your diagnosis and proper emergency care to give to paramedics or ER staff, if needed. Many emergency room personell and even doctors are painfully unaware of how to properly respond to an Addisonian in distress of any kind! Perhaps all of this may have been old news to you! If so, sorry to go through it all! BEST OF HEALTH FOR THE NEW YEAR!! And congratulations on obtaining your diagnosis! ~ Tracy
    This is all good imformation for me, I'll share this with my doctor on my next visit.

    Through this I am learning to set and keep boundaries, my routine schedule gets off track, so easily, when I feel good. I had even made a promise that no matter what I wasn't going to get out of balance. Oh well, every day is a new day, and my husband is encouraging me to stick to a routine.

    Thank you, for sharing, I copied it to take into my doctor, hope you don't mind.

    It's good to be feeling 80-100%, if I feel off, I rest, note what I did, ate, etc...and bounce back quickly so far.

    I wish you the best, too, "Happy Thanksgiving!" and may you be blessed today and through this coming year!

     
    Old 11-22-2005, 08:04 AM   #6
    Keraly
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    Re: Can anyone shed light on this (?)

    Thank you! And I do not mind your taking my notes to discuss with your doctor! Sometimes I need a mind jog, too, of what topics I want to be sure to ask our doctors! Take good care. Your practice of keeping notes of a diary of what you have done and eaten are a great idea! ~ Tracy

     
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