Still hurting with gi pain and nausea and sunsensitivity and all

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/29/2007 7:44 PM (GMT -7)   
Well, I'm getting used to living like a troll.  I don't even miss going outside anymore, like I used to, have no desire to hurt my eyes looking out the window.  I feel like I eat a steady diet of crushed glass, and of course, so far, nothing is wrong except for some "inflammation" of unknown cause, probably my ai disease or food allergy.  The pain meds and dicyclomine don't work anymore, and a trip the bathroom strikes fear into me.  Not eating most of the time has worked in the past, though now I'm working up to stomach heartburn and stuff, probably from worrying and not eating, so I eat a little, which I later regret.  Today, I felt so bad I went from the bed to the chair and stayed there all day and then went back to bed.  Posting here is the most I've done all day, and I hate the wasted time.  I know some of you all are going through this too and its just plain rotten.  I hope they figure out what is wrong and don't just tell me nothing is wrong, because I know this is definitely not normal and not something I plan to live through my life with. I can deal with the sun sensitivity, but this other stuff is just the pits.  I've been doing the teas, mint and ginger, and antinausea meds.  They help enough that I can eat, but then it hurts later so I wish I didn't.  Well, maybe I should call the rheumie and get back on pred again, since it helped so so much.  What do you think?  I have an endo appt coming up and I'm trying to straighten out enough that if she runs tests they will be accurate.  I'm confused.  I hope you are all doing ok.  I'm looking forward to fall and winter so much.  It will be summer for me!  Cool temps and a fire in the fireplace! 
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


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/29/2007 7:57 PM (GMT -7)   
Oh Marji . . . you sound aweful.

I know I really preach this . . . but DO make the big typed sheet for your doc. At the risk of repeating myself one too many times, try it like this.

______________________

Date
Your Name
Your Address
Your Telephone No.

List of your doctors with their specialty and their address/tel number

Allergies

List of RX Meds with strength and dosing

List of OTC Meds and supplements EVERYTHING

Next (IMPORTANT)

What I want Dr. McDreamy to do for me today. Then list it very clearly here!!

List any questions you have.

List ALL of your current symptoms

List ALL of your Dx

_______________________

Do this on your computer so that after today, you only need to keep it updated. The first portion of this list, right down thru the meds, should go in your wallet and your hubby's wallet in case of emergency, you just hand it to the ER docs.

Most doctors can only only dream of having a patient walk in with everything clearly and concisely spelled out like that. It takes them only a couple minutes to read it, then they place it in their file and they don't need to waste your precious few moments of an appointment trying to document such a bunch of detail. They love it!!

Make sure and keep a copy in your hand too so that you can go over your questions and make sure the doctor addresses the big issue you chose for that visit.

So sorry if this is getting old . . . but it is our best chance of actually accomplishing something at a short doctor visit.

So sorry your are feeling so aweful Marji . . . it sounds just miserable.

Sending you a nice hot pot of tea and a beautiful china tea cup to drink it in.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/30/2007 11:50 PM (GMT -7)   
Bump!!

Hope you are ok Marji . . . haven't heard from you for a couple days. How's it going?

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 10/1/2007 7:33 AM (GMT -7)   
Marji, I'm so sorry to hear how rotten you feel again, especially after doing so well on the prednisone. Rosie had some great suggestions for you and I do think it would be a good idea to call your rheumy and talk about how bad things are and discuss the possibility of getting back on prednisone.

Hang in there. Lots of (((((Hugs)))))
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 10/1/2007 12:40 PM (GMT -7)   
Hi--
I'm sorry I haven't been able to post. My body must be having some kind of boomerang effect to the prednisone wearing off. I'm in horrible pain in my left shoulder and neck and between my shoulders and I think my neck must be collapsing more. I have 50% spinal compression there already and have had two surgeries and there is no good surgeon around here to go to. I really feel like this arthritis is getting beyond the point of what I can handle. I don't want to end up losing the use of my arms or something. I've had a lot of arm numbness, but numbness I can live with, pain I can't. I was unable to use my hands the other day and that was strange, they have never been so numb for so long, but I could tell they would come back so I'm not worried. Just positional stuff, falling asleep. And now the bladder and gi are both going on. I started the penicillin and that is helping both I think. I want to call the rheumy and get back on the prednisone, its either that or much stronger narcotics, but I have my first appt with a new endo and if I have cushings, they won't be able to tell. It hurts like I just had surgery it hurts so bad. No position is comfortable. I couldn't sleep, and when I did get a little comfortable, it was with a rolled up towel around my neck. Neck braces don't fit me anymore. I can't go to Atlanta for neck sugery it is six hours plus away and I have no where to stay and could never make it home again post surgical and they told me the only thing they can do is put the rod in and it was pretty critical before but the surgeons near me that take my insurance are so bad that the surgeon I saw that wasn't on my insurance wouldn't refer me, he said I was better off just trying to get by. The rod they put in my mom's back didn't help much, we don't think, but maybe it helps it from getting worse, it didn't straighten anything or fix anything. Part of me wants to just take pain killers and try to hope that eventually they will figure out what's making this arthritis go nuts and treat it and it will go away. The prednisone does seem to help so much. I need to go it hurts to sit up. I need to go to the doc but I'm too hurt to drive myself, so I have to take the last of my pain med and try to go in tomorrow or something. I forgot how much this hurts. I hope everybody is ok, I just have to lay down.
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


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/1/2007 8:09 PM (GMT -7)   
Oh Marji . . . you poor thing . . . I'm SOooo sorry. Thanks for the update . . . Ohhhhh you sound SO sick. Sending you lots of hot tea and suggesting that you have someone drive you to the ER as bad as you sound.

Prayers and blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 10/5/2007 7:51 PM (GMT -7)   
Hi, Marji. I've been MIA for a few days, just trying to get out and away to relax a little and stop my brain from driving me crazy with these painful memories. I'm SO sorry to hear you are feeling SO badly. I would definitely have to ask my doc to put me back on the prednisone until they can find something. You can only tolerate so much pain and discomfort and I just feel like if the doc knew the way you truly feel (like you explain here) that they would be obligated to give you whatever helped until they can come up with something better. I will be praying for you. Please take care,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 10/6/2007 10:09 AM (GMT -7)   
Hi Marji, I just wanted to check in on you. You really sound like you are having a terrible time. Sending thoughts and prayers your way.
love ya
carol
God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 10/6/2007 5:25 PM (GMT -7)   
Thanks, Carol, Sharen and Rosie,
I'm just getting to the point where I can get up and down without too much pain and walk less stiffly. It still hurts and I don't know whether I hurt and the drugs are helping or whether it is getting better. I guess it doesn't really matter as long as the pain is getting better. I'm trying not to take pred til after the 13th when I see my new endocrinologist because I want my bloodwork to be accurate and I think I have mild cushings. I hope you all are doing good. Bladder, Bowels, and Back, there's three Bs for you, and I'm getting them all now. I did take a ride in the car today and sat on a pillow and it was nice to get out even though it was raiining.
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


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/6/2007 5:52 PM (GMT -7)   
Hugs for you sis . . . oh you sound like a wreck. So . . . a whole week until you see the endo doc . . . does the pred change the bloodwork?? I'm glad you enjoyed your outing. Its amazing what a treat it is after being sick in bed for a while. I sure hope the endo can answer some questions for you. Thanks for the update and I hope the pain continues to subside.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 10/6/2007 9:59 PM (GMT -7)   
Marji,
I'm so sorry that you're feeling so low and in so much pain. Please post as soon as you are able. We'll be glad to hear from you, but don't rush it--you come first. We care.

xoxo emmie
</FONT>

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

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