Still hiding in the dark

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/15/2007 9:37 AM (GMT -7)   
Still unable to tolerate sun through the windows, have blankets over them.  The sun seems particularly bad this year, as if our atmosphere isn't screening out enough rays or something.  I've been nauseous for days and I'm afraid my liver is really bad, I'm having alot of pain there.  When I went off synthroid for three weeks I gained ten pounds and I'm already overweight, so it put me in my liver danger zone.  I'm struggling to lose it quickly, but nothing is working.  I think the protopic and steroid ointments are making this worse.  I'm starting to repigment, kind of quickly, but losing in new areas. I guess I'm going to have to call the doc and insist they do some liver tests.  I may end up going to the ER if it keeps up.  I'm kind of scared about it.  I'm so tired and nauseaus. 
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


omega
Veteran Member


Date Joined Jan 2007
Total Posts : 607
   Posted 6/15/2007 10:25 AM (GMT -7)   
Sorry to hear about you are not feeling well. It is good that you call your doc n insist them to do some liver tests for you. I hope you feel better soon.

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/15/2007 10:37 AM (GMT -7)   
I made an appt with the hepatologist at that research center again for a checkup. He said yearly, so it's been longer. The thought of driving there in the sun is daunting, but its early in the morning. Maybe it will rain that day, I hope so.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


Leta
Veteran Member


Date Joined Aug 2005
Total Posts : 590
   Posted 6/15/2007 2:57 PM (GMT -7)   
hey cured,

I am so so sorry that you are dealing with this. On a brighter note, I am glad I am not the only one. I am curious if they have checked you for Porphyria, which is a hepatitic disease that runs with lupus or is mistaken for lupus alot!!! I would suggest doing a search for Porphyria and see what I am talking about. I have it and now that we know I do I am doing a bit better. I too live in the dark, and if you need to talk let me know!!!

Leta
sle 99 w/cns & autonomic involvement 11/05, photosensitive 04/04, sjogren's syndrome 99, ra 99, fibromyalgia 8/05, sinus tachycardia 6/04, asthma 96, allergies to artificial dyes, sulfa, penicillin, cephalosporin 06/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06, prob mini-stroke 5/06, Porphyria 5/06, Vitamin D deficiency severe 4/07. Meds are baclofen 40 mg, prenatal tabs, calcium, potassium, vit D prescription 50,000 iu, qvar, albuteral, singulair, plaquenil 400 mg, tramadol 400 mg, darvecet 100 mg, artificial tears, stuff for the sjogrens.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/15/2007 8:39 PM (GMT -7)   
Thanks Leta, it is a little bit strange to adjust to, especially since I was always a big outdoors person. I feel like a vampire. I'll have to check into the Porphyria and get some info, esp. since it has to do with the liver. I'm rereading Sarte's Nausea and I think he must have had it. He talks alot about not liking sunlight and feeling sick from it alot and feeling better in the daytime. He writes stuff like "when the sun is shining, the best thing to do is to go to bed" and "When it is dark, the objects and I will come out of limbo." It's strangely comforting.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 6/15/2007 10:36 PM (GMT -7)   
Marji,

Call the doc and let us know what you find out and how you are doing.

xoxo emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/15/2007 11:24 PM (GMT -7)   
Thanks Leta and Emmi. I read the stuff and it sounds like I probably have it. It would make sense. I'm a little scared and am going to ER for pain andnausea in the morning and will see some doc on Monday if I can to get some testing. I think finally, I have some clue about whats wrong. Today I got dark freckled patches on my cheeks near my eyes. Mentally, I'mnot so good. How do you go out during the day? How can you effectively block out the light from your face? Does sunscreen work for this? Are some of the hoodies big enough to cast a good shadow over your face, or do you have to wear some kind of big hat. Id prefer a dark veil or skymask and dark sunglasses, but I'd probably get taken away. Sad isn't it?
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 6/16/2007 7:33 AM (GMT -7)   
I wear extra dark sunglasses, including inside. I figure as long as I don't wear them into a bank or up to a checkout counter somewhere, I'm probably safe.

But I have seriously wondered how far we can go before they go 'terrorist!' on us.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Xanax, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
OTC Daily: Multivitamin, Calcium, B-12, C, D; As Needed: Ibuprofen, Tylenol Sinus

Allergies: All Sulfa-based medications; Levofloxacin,  Levaquin

DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


caring
Regular Member


Date Joined May 2007
Total Posts : 26
   Posted 6/16/2007 1:43 PM (GMT -7)   
I am in the same boat. I say I live in my "bat cave". When I coffee with my friends, I always want to pull down the shades in the coffee shop, and usually wear a hat. Still, I always end up with a red face. It's really the pits.
Nan

Leta
Veteran Member


Date Joined Aug 2005
Total Posts : 590
   Posted 6/16/2007 11:19 PM (GMT -7)   
Hey cured,

Sorry you are having such a rough time with this. I can tell you my experiences but they would take forever lol. As for the sun sensitivity, I can say the plaquenil makes the Porphyria all worst except if it would be cutaneous, it would bet better. I have lived like this for 3 years and it is a hard thing to learn to adjust to and it is always changing like the lupus. Over time when you have flares and labs done you will start to be able to tell the difference with what is what, and sometimes they will intermingle. My pain is controlled with meds and with glucose. Check out the website for the Porphyria Foundation for some info on this. I know I cannot list the website, or don't think I can. As for going out, sunscreen doesn't really work but there are some new ones on the market that I am researching to test out. I do a patch test and my skin and body are sensitive to all I take. Antibiotics and many things cause a flare, heck the once a month cycle does. LOL. I hide in the dark, literally living like that day by day. I belong to a group called SUN1 that is online with information and support. I cover up head to toe, have my car windows tinted and use suncreen althought it doesn't usually work. I wear a baseball hat with sunglasses since the big ones don't help any more so I choose hats I like. And I burn after about 5-10 minutes after being in the sun. And also know which of my meds will make the porphyria worst.

If you have any questions or I missed something let me know.

Leta
sle 99 w/cns & autonomic involvement 11/05, photosensitive 04/04, sjogren's syndrome 99, ra 99, fibromyalgia 8/05, sinus tachycardia 6/04, asthma 96, allergies to artificial dyes, sulfa, penicillin, cephalosporin 06/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06, prob mini-stroke 5/06, Porphyria 5/06, Vitamin D deficiency severe 4/07. Meds are baclofen 40 mg, prenatal tabs, calcium, potassium, vit D prescription 50,000 iu, qvar, albuteral, singulair, plaquenil 400 mg, tramadol 400 mg, darvecet 100 mg, artificial tears, stuff for the sjogrens.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/19/2007 1:03 PM (GMT -7)   
Thanks Leta and Nan--
I'm actually doing a little better, perhaps from staying in the dark for a while. I was able to get to the store to get two hats and even was able to spend a few hours outside on Sunday, fishing and swimming in the river. But then my skin got real burnt and I'm back inside for a while. It seems like it comes and goes, like a lupus flare, like you get too much sun and then its awful and you go in the dark and things get better and you are able to tolerate the sun better. The plaq didn't cause a noticeable change when I started taking it, I've been on it for about nine months now, I think. It makes me feel a lot better. I quit taking my soma at night and this seemed to help strangely enough. My liver pain went away and I was able to get out that one day. I'm supposed to get 15 a day in the sun for my vitiligo tx, so I do that. Maybe the soma just overloaded my liver to the point that it made the sun sensitivity more noticeable, I don't know. I just have to get tested when I can afford it.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


Leta
Veteran Member


Date Joined Aug 2005
Total Posts : 590
   Posted 6/19/2007 3:40 PM (GMT -7)   
Hey cured,

All that you said about hiding in the dark and then tolerating the sun a bit more, that is how I am too. I use it to go places I really want to be at, or things I really want to do that week, but yes, you do pay later. eyes

The soma affecting your pancreas, I can say that is normal if you do have Porphyria. I urge you please, VISIT THE PORPHYRIA FOUNDATION WEBSITE. SOMA IS ON DO NOT TAKE LIST FOR THIS DISEASE. Sorry to do all caps, but I cannot urge to you how important this is to tell your docs and demand this testing in a blood test. If you have this they can treat it and control symptoms and pain, sometimes with less meds. Sorry if I sound rude, it took me 2 1/2 years to get the dx and I cannot tell you what a relief it was to know.

I am wondering though, you only list the sun and pancreas but you are on Klonipin. I also noticed about 4-5 symptoms of dx you have that would fit into this category. I am not saying you have the Porphyria, but definitely need to check the website.

What other symptoms do you have? I hope you are feeling better from your outting.

Love always,
Leta
sle 99 w/cns & autonomic involvement 11/05, photosensitive 04/04, sjogren's syndrome 99, ra 99, fibromyalgia 8/05, sinus tachycardia 6/04, asthma 96, allergies to artificial dyes, sulfa, penicillin, cephalosporin 06/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06, prob mini-stroke 5/06, Porphyria 5/06, Vitamin D deficiency severe 4/07. Meds are baclofen 40 mg, prenatal tabs, calcium, potassium, vit D prescription 50,000 iu, qvar, albuteral, singulair, plaquenil 400 mg, tramadol 400 mg, darvecet 100 mg, artificial tears, stuff for the sjogrens.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/19/2007 11:14 PM (GMT -7)   
Thanks Leta, I went to the site last time and I saw the list but didn't think to look up the soma on it. Thanks again for helping me. I looked at some of the stuff, most of my regulars are ok. I will definitely push my rheumie to test me and if he won't, I will beg the hepatologist to. What is really the best definitive test. Bloodwork? or 24 urine? It would be good to know what the best test is so I can get the right test and not just some halfway inconclusive waste of money thing. I also have a hx of hemochromatosis and probably still have high ferritin, they stopped checking it because it was always high. Heaven forbid they treat it. Liver pain. Nausea and hep like feeling, severe fatigue, burning of skin when out in sun, even if the skin is covered sometimes. Loss of pigment and hyperpigmented spots, Addisons like hyperpigmentation, kidney pain, chronic bladder pain, no rash, but some acne like stuff forms around my mouth that is like pimples with no heads that turn into scabs and sometimes scar. Red face and difficultie cooling down and slowing heart rate, dizziness and loss of vision in a way, like I lose color and focus and frequently have to blink and blink and try to get refocused. I haven't got an itchy rash, but the pix of some of the milder skin stuff looks like areas of my vitiligo dotted with hyperpigmentation. Also, these areas get cold and blue sometimes, as if they are dying or breaking down and I have neuropathy in these areas. The liver pain and fatigue was most noticeable and the beginning of my sun problems corresponds with the second month of taking the somas every night, which is when a drug usually builds up in my system. I got wood blinds on sale at home depot for 21.00 a piece, no matter the size, so I got a real good deal and I put them up where I could and they block the light well and look good. I've also had an increase in joint pain bad in big toe and thumbs and neck stiff and almost a fever feeling and headache, but temp is low by one or two degrees--probably due to my thyroid. And, of course, the nausea and some diarrhea/gi pain. I read that it is very common after hepc infection and hemochromatosis, both of which I had, and involves fatty liver and I have severe fatty liver, every cell is as fatty as it can be, and so this would be a no brainer to test for. I guess they expected me to bring up sun sensitivity or thought my skin symptoms looked too mild. Is it important to get tested while the porphyria is flaring? If so, I need to go ASAP because it is getting better.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


Leta
Veteran Member


Date Joined Aug 2005
Total Posts : 590
   Posted 6/20/2007 5:33 AM (GMT -7)   
Hey cured,

Almost all the symptoms you are saying of from the liver, the sun, the trigger med, the fever feeling but off a bit, joint pain, nausea, vomitting, diarhea and/or I get constipation during these attacks. I too heard the same crap so I took benadryl, went outside and took pictures to take to the doctor. They almost crapped their pants. yeah eyes eyes So for them to say well your skin looks fine say yes it may now but whip out the pictures girl, because those don't lie. How could they say that then?
And if you do have this the best doctor is a Hematologist for this once you get a positive.

If you are going to get tested the best for to start off with is the 24 hour urine collection and a porphyrin blood plasma test. The reason for both is the blood is positive in most cases, and urine during a severe high attack. Do not change how you do things until after the test. Also both cannot be exposed to the sun and the must be refrigerated or frozen for the blood. All things must be kept dark so when you go to the doctor, let me know and I will get you the information. The stiff neck etc, is it too. I am glad you found your blinds at the Home Depot. I bought the 12 mil roll up shades and but those underneath my decorative bampoo shades but of course did not get as lucky with the deal u got. yeah

Sorry if I sounded insistant. I just would hate you to get as violently sick with this dd as I did. Oh the cold limbs and neuropathy, I get those during attacks too.

Keep me posted,
Leta
sle 99 w/cns & autonomic involvement 11/05, photosensitive 04/04, sjogren's syndrome 99, ra 99, fibromyalgia 8/05, sinus tachycardia 6/04, asthma 96, allergies to artificial dyes, sulfa, penicillin, cephalosporin 06/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06, prob mini-stroke 5/06, Porphyria 5/06, Vitamin D deficiency severe 4/07. Meds are baclofen 40 mg, prenatal tabs, calcium, potassium, vit D prescription 50,000 iu, qvar, albuteral, singulair, plaquenil 400 mg, tramadol 400 mg, darvecet 100 mg, artificial tears, stuff for the sjogrens.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/21/2007 4:29 PM (GMT -7)   
Thanks leta, calling the doc tomorrow to set up appt and request testing. I hope I didn't wait too long. I feel like the problem is going away, I feel well enough to drive myself to the doc in the bright sun. Just my luck. Oh well, if I am sick, hopefully it will show up in blood and urine. Thank you so much for your help. I do think this is the answer to my bizarre health problems, everything fits.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

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