Really discouraged...

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NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/16/2011 9:22 PM (GMT -6)   
I have been dealing with quite a few symptoms on top of having a 15 month old (very) bouncing baby boy and I am having so many feelings of frustration, depression, and that I am not being a good enough mother to him because I am in so much pain daily and have absolutely zero energy at all. My arms and legs keep going numb, I have 3 large patches of open sores on my scalp now that add to the irritating pain, hard lumps that are getting larger daily on my head (especially behind my left ear), swollen lymph nodes all over, a bad rash on my face and chest, bruises all over my body as if I was beaten and yet I've been in bed most of the week, and severe pain in every bone of my body and joints! I can't hardly wash or brush my hair for it falling out in globs and am just feeling miserable! I still have no diagnosis to what is wrong and my family doctor told me the only rheumatologist that will take my insurance can't see me until--NOVEMBER! I was hysterical with him on the phone this week and told him that I just literally cannot deal with this severe pain and fatique anymore! I feel like my whole life is crashing down around me with the doctors standing by to spectate rather than help right now! I have asked them if they could just try putting me back on one round of corticosteroids which relieved my symptoms almost completely last year when a similar bout happened after my son was born--and he said that steroids are too dangerous to just prescribe without a diagnosis in place! They don't seem to care that I am in constant unrelenting pain and I don't think they realize how long a week of this is to a person dealing with it--muchless the prospect of a few months!
 
Is there ever any relief? I can't sleep at night I am hurting so bad and the IC that I also have causes severe pelvic pain as well. My doctor there said that insurance won't cover the necessary pace maker until she proves to them that she has tried these treatments for it first for the next 2 months (weekly treatments) yet they are only scheduling me every 3 weeks because there are too many patients to do it weekly--so that too is looking like it will drag on forever at this point where each hour is just agony. I find myself questioning what the point of life is if I am going to feel like this every day. It is beyond a "low quality of life" point to a NO quality of life right now. The only thing keeping me from going completely crazy is my son and husband. If it weren't for them right now I really think I would completely give up. I just can't take this much more. I feel like I have literally been hit by a truck or something and just all over severe pain. I just don't understand the doctor why he won't at least try the steroids again or give me something to help relieve this! The only tests that are showing the doctor anything at this point (from what I remember so far) is that there is arthritis showing in several of my joints, scoliosis in my back, and my rheumatoid factor (RF) is pretty elevated. My ANA is negative.
 
Does anyone have any help for me? I live in Georgia...  I am really desperate and just can't deal with this anymore. I just want my life back. I have been working on my doctorate, working, and have my family which is so important to me--and I am barely able to get out of bed the past couple weeks--at all!!!
 
Thank you to anyone who can help me keep focus right now. I am just really discouraged! Nicki

Daisy:)
New Member


Date Joined Apr 2011
Total Posts : 6
   Posted 4/17/2011 2:08 AM (GMT -6)   

I know what it's like to be sick all the time with little kids.  I can't really advise you on what might be going on with you, accept that it sounds like you should go get a second and third opinion.  Refusing to give you steroids w/o diagnosis seems strange, because it was my experience that my immediate relief from being prescribed prednisone seemed to be significant in being diagnosed with lupus.  It seemed like part of the diagnostic process.

But my main suggestion, because I had to do this when my kids were little, is try to seek out help with child care.  I don't know if you have family that can help.  What I did was I found an organization that helps families in crisis.  They were a private non-profit organization whose mission is preventing abuse and neglect of children.  I know that sounds harsh.  But there were families there for all different reasons.  Nobody ever treated me like I was a danger to my child or treated me as if I might be an abusive mother.  I met with a caseworker regularly who evaluated the difficulty that I was having being sick with small children, and they offered parenting classes, groups, resources, FREE preschool (I know your's is younger), even clothes and toys, but best of all FREE respite care so that I could have three-four hours a day a couple times a week to rest or go to dr. appts. by myself.  I don't know where you live, but hopefully you have something around that can help you.  Don't be afraid to ask for help, it doesn't make you a bad mother.  It makes you a good mother, because if you don't take care of yourself, you can't take care of your family.  Good luck.  And don't beat yourself up.  Feeling guilty about your limitations as a mother right now will not accomplish anything.  It will only cause more stress, which makes you sicker.


Lupus and Reynaud's Syndrome 2002; Fibromyalgia added 2006; Lupus diagnosis changed to Undifferentiated Connective Tissue Disease in 2007; Gastroparesis (stomach paralysis) 2007-2010; Lifelong struggle with depression; Anxiety with panic attacks since 2008.
Medications: Plaquenil, Fentanyl patch, Tylenol, Aleve, Methocarbamol, Klonopin, Wellbutrin, Microgestin, Kava, Vitamin D, Miralax, Multi

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/17/2011 6:43 AM (GMT -6)   
Dear Daisy and Tfofd,
Thank you so much for your kind words! I am extremely fortunate to have a husband that is very supportive--and mostly home right now with economy bad in construction--so we are both in online classes which makes it where we are both home with our little 15 month old--so when I read your post I also realized how much I have to be grateful for that I have him helping me with the baby! It is just that I feel so guilty when he wants to go for a walk or just run around outside or (even inside) and I literally cannot chase him at all. Then I end up having to keep him on the bed with me or in his nursery with me or in his crib to contain him if my husband isn't around so that I can keep up with him and although I try to do activities that still tailor to him--he is frustrated I think because he just wants to run around outside and I feel so bad for him!
 
I just am beginning to think these doctors just don't care--just do not care! I have been telling them for the past couple months how bad I am feeling and it is like I might as well just tell a brick wall I feel bad! They agree that something is wrong, and yes, we need to get to the bottom of it, so come back in a month and in the meantime go and give me some more bloodwork or do this or that... and I am just fed up with this waiting and being in so much pain!!!  I know that I sound extremely ugly right now about the doctors--but they have the power to relieve my symptoms even minimally and just don't--and to me it says they either don't care, or they don't believe me completely, or it just isn't important to them that I am in this much pain! I hardly sleep at night--but for a couple hours if that... wake up every morning with my arms completely asleep all the way down--have to shake them awake just so I can go pick up my son! I really feel that doctors should be held accountable when they leave a person in this condition--that they should either get to the bottom of it or refer them to someone who can within a reasonable period of time!!!  Even our judicial system warrants "a speedy trial" and yet I feel like I am being sentenced, tried, and hung already with this undiagnosed problem and then waiting forever in the prison of my body waiting and waiting on anyone to help me find relief!!!  It is so unfair.... I may have to find another doctor,  but it would mean starting all over with them...the testing, establishing myself with them--and I just don't have the energy anymore. I didn't even get bloodwork done last week at the hospital because I literally could not get out of bed I was so weak... and when the doctor wanted to know why I hadn't gone he was almost incredulous that I hadn't managed to go (we have to go to our local hospital for all blood)... I just don't think he is "getting it" the intensity and duration of this and I am not seeing the end of the tunnel hardly anymore!!!

Daisy:)
New Member


Date Joined Apr 2011
Total Posts : 6
   Posted 4/17/2011 3:17 PM (GMT -6)   
I totally know what you mean by feeling like your doctors have all the power. I cry every time I see my Rheumatologist. I leave her office, go into the hospital restroom and CRY for like a 1/2 hour before I can compose myself. And she is a woman, so I expected her to have a little bit more empathy or something. But she doesn't and it crushes me everytime. I go in there hoping for relief and leave feeling like a scolded child. She always blames how I'm feeling on my lack of exercise. How am I supposed to exercise when I'm in hot, fiery pain everywhere, have horrible fatigue, feel sick with virus symptoms almost everyday, and have 2 small kids to take care of. I know I need to exercise, but that is not what is making me sick and it is not self-inflicted.
I think doctors get frustrated when they don't know how to treat someone, and it comes off as they don't believe you. I think their egos get in the way of them being able to just say "I hear the difficulties you are having. It must be very difficult to be experiencing X, Y, and Z symptoms, but your symptoms are not clearly pointing to any clear diagnosis." They don't want to admit that they don't know everything. You have to tell yourself, a mantra of sorts, "Nobody knows what it feels like to be in my body but ME. My feelings and experiences in my body are REAL." Trust yourself, and I'm glad to hear that you have a support system. Sounds like you need new docs, but I know that's easier said than done. I wonder if you went to the ER, what would happen? I went a few months ago because I had severe edema and thought my kidneys were compromised. I ended up to be okay, but they still gave me tests, x-rays, and meds to help the symptoms temporarily and told me to follow up with my doc. My doctor office called me as soon as they were notified of my ER visit, got me in immediately, and took me much more seriously. It might be a little more expensive to go that way, but if you are desperate, it might be worth it to get immediate medication help. What you have going for you is that you have VISIBLE symptoms - scalp, bruising, rash. Are you on any pain meds at least?
Oh, and I'm right there with you about feeling like this will never end, and this is NO quality of life. I would never in a million years have thought that my life would be stripped down to so little. Just going grocery shopping with my kids (which is stressful and takes 2+ hours) can land me in bed for days. I've lost all my friends, my kids watch way more TV than I want, I feel like life is so unpredictable that I can't plan or commit to anything, and sometimes it feels like my husband and kids are living a life without me. The kids ask everyday "Are you sick today?" and are already showing signs that they feel responsible to take care of me (at age 5 and 8.) Life is full of guilt, fear, dissappointment, and despair sometimes. I have a therapist that I see once a week (when health permits) and that helps a lot.
Lupus and Reynaud's Syndrome 2002; Fibromyalgia added 2006; Lupus diagnosis changed to Undifferentiated Connective Tissue Disease in 2007; Gastroparesis (stomach paralysis) 2007-2010; Lifelong struggle with depression; Anxiety with panic attacks since 2008.
Medications: Plaquenil, Fentanyl patch, Tylenol, Aleve, Methocarbamol, Klonopin, Wellbutrin, Microgestin, Kava, Vitamin D, Miralax, Multi

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/17/2011 4:33 PM (GMT -6)   
Niki, if you live near the Gainsville area there's some great doctors. The Northeast Georgia Diagnostic Clinic department of Rheumatology takes many different insurances. They have several satellite offices in North Georgia. (1-800-820-6432) They have a website: www.ngdc.com
Joy

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/17/2011 5:17 PM (GMT -6)   
Daisy, my heart goes out to you!!! I hear my ownself "talking" in your words!!! I am sure some day they will know more about this "mystery" illness we have down the road...but will it even be in our lifetime? And we will have to continue to suffer and be treated with so little respect because of it. It is almost like if you have a diagnosis, people treat you like you deserve to be (I don't know how to explain this), but if someone tells you they have cancer, or pneumonia, or on dialysis... each diagnosis kind of relates to others how they also need to be there for you in a supportive way. The hardest thing for me is that I don't even know what is wrong with me--so I can't even clearly verbalize it to others and they think it is just some little flu or something and don't realize this is an everyday, every minute, painful, painful situation--day in day out!
 
I am so sorry the rheumatologist makes you feel so bad you would cry like that! I wish I were there to give you a big bearhug each time and tell the doctors to stop making you feel bad--you already feel bad enough and you need someone to show you support. I think after several weeks or months of hearing "I'm in pain" or "I'm feeling so tired all the time" or whatever it is, they just literally stop HEARING us... it is just the same-old, same-old to them and they don't realize this is a daily, hourly, reality to us....  I sure wish I could tell that doctor for you! and yet I am scared to stand up to my own doctor and say "enough is enough"! When can I expect to see an end to this situation?!!!  Today has been miserable!!!!  And I don't have pain meds. The doctor said that he can refer me somewhere for that and the way he said it made me feel like he was saying I was a bad person if I had to do that!!!  And so I just haven't pursued it. I am seriously thinking of going to the ER though as maybe it would quicken things up. I may have to go to Emory in Atlanta though because we live in such a small town our hospital is more like an urgent care....  I don't know... I am still trying to stick it out a little longer here. My limbs are just about staying numb now--in fact, my one hand is so numb from trying to type I am going to have to stop for a minute to get feeling back--but I wanted to tell you how much you mean to me right now! You have been a real comfort in a very dark hour this weekend!  Nicki

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/17/2011 5:19 PM (GMT -6)   
couchtater said...
Niki, if you live near the Gainsville area there's some great doctors. The Northeast Georgia Diagnostic Clinic department of Rheumatology takes many different insurances. They have several satellite offices in North Georgia. (1-800-820-6432) They have a website: www.ngdc.com
Joy, thank you so much for the information. I will try to contact them tomorrow. I live south of Atlanta so that sounds pretty far from us right now--but maybe they have a satellite office nearerby. I really appreciate your help!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/17/2011 7:41 PM (GMT -6)   
The site says they are in Athens, Gainsville, Demorest, and Hoschton. Good luck!
Joy

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/17/2011 7:58 PM (GMT -6)   
Thank you so much Joy!!!  I appreciate each person that has taken the time to help me. It really keeps me from hitting the floor with discouragement right now. I got my husband to take pictures of me tonight as the symptoms are just unreal and actually "showing up" pretty nicely (for once)... The bruises everywhere and swollen joints, the terrible red spots that are oozing some kind of clear sticky fluid on my scalp, the rash on my face and chest and all... I figure I need to start taking pictures because the symptoms change so much that by the time I finally see doctors a lot of them go and all and I need to have some kind of concrete record to show them... (the idea was given to me by a friend and it made a lot of sense). She also told me I should keep a diary--which I am not sure I have the energy or time for... but I probably ought to do that too... I am working on my dissertation in the doctoral program and this illness is simply taking EVERYTHING out of me lately... but you are all giving me a new courage to keep trying--just to know there are others out there who are suffering just as much as me if not worse and are pillars of support to me right now! Thank you Joy!!!

panther fern
Regular Member


Date Joined Feb 2011
Total Posts : 163
   Posted 4/18/2011 3:20 AM (GMT -6)   
Niki, Oh man I have been in your shoes and worn them out. 1. Keep a health journal, daily 1-10 scale 10 being i am jumping off the bridge I never use ten.
2.any noticeable symptoms, get photos of Print and date them, make note of what they felt like or didn't feel like. 3. When you go to your appt. Bring your husband when you have a barrel of problems and you feel overwhelmed and insane..Let him be your voice. I would go in and be well .... "im ok i guess" David my husband would look at the list i had written over the past two weeks for my doctor...questions and suggestions. 4. be your own pt advocate. When i was so frustrated i seriously thought i must be a hypochondriac because i have all there issues and nothing is coming up in my blood work. and it didn't for 5 years. My family doctor decided i had an auto immune problem. so he said i am going to put you on a drug. if it helps that means most likely you have an AI disease my guess is SLE. if it doesn't help with in a month you will go off it because it is hard on your liver. The drug was Methotrexate, and it did help quite a bit.

IF you have a chronic illness... make sure the family doc you have is one that has compassion and that knows you and you feel comfortable with. you don't want to feel like a number. You have the right to choose who you see in no way am i applying that your dr is not good i am just letting you know when you add a rheumy, a neurologist, and on and on...it helps to have rapor and that the drs are willing to communicate well with each other.


It is hard at times not to feel overwhelmed or challenged. My personal relationship with God is what gets me through my really rough times. i keep certain promises close to me. Maybe it is a bit corny, but it helps me. Everyone has to find their special corny way to accept their adjustments due to their ailments.

My thoughts and prayers are with you. I wish nothing but the best for you and your family.

I wish I had a magic wand to fix everyone. Something i still have trouble with and i have been sick for about 18 years that is asking for help. You need to ask for help esp when you are so overwhelmed. explain to a friend, sibling, parent, hey i am not feeling so hot, could you just help me out for awhile until they (the drs.) can figure out what is going on with me.

take care fern

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/18/2011 5:28 AM (GMT -6)   
Fern, thank you so much for your advice! I think I may see if my family doctor can see me today or let him know I am going to the ER in Atlanta for further help. I am so sick this morning I can't hardly hold my head up. I am so sore all over like I was beaten for hours, swollen, bruised, and on a scale of 1 to 10--at the 10 in pain...beyond 10. I just literally can't deal with this pain anymore. I think you are right to have my husband be my advocate. He has seen each step of the way the actual symptoms when they happened, how, the intensity and my struggle to get back up each day and try to just move. Maybe he can speak up for me today. Either way, I can't go on another day like this. I am in so much pain and this just is not acceptable to me anymore. There has to be something they can do or send me elsewhere! I would write more but my wrists so sore and gong numb. you really helped me. Nicki

omega
Veteran Member


Date Joined Jan 2007
Total Posts : 607
   Posted 4/18/2011 12:53 PM (GMT -6)   
If you live in Atlanta, try Dekalb Medical Center. The Rhumty is specialized in lupus. You can call his primary centre and ask if they accept your insurance. The phone number is 404-299-0187. I do not know if I can give you his name in this forum. The first letter of his last name starts with a B. You can google Dekalb Medical center and search for "doctor." Then in the box, choose Rhumentology. His name is the first on the list.
I hope you feel bteter soon.
DX SLE 1988; APS (Antiphospholipid Syndrome); High-Blood Pressure; Pred 2mg, Verapmil 40 mg bd (for migraine headaches), Cellcept 2000 mg;Omerprazole 40 mg; Warfarin; Calcium + Vitamin D 1200mg, Folic Acid 5 mg; Simvastin; Rampipril 1.25 mg

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/18/2011 1:15 PM (GMT -6)   
Omega, you are incredible! Thank you so much! I actually just got back from going to the Emergency Room nearby. I am overwhelmed right now with gratitude to the doctor who saw me there. He was so loving and compassionate and was very upset at my family doctor for not helping me more. He said there is no reason for someone to have to suffer like this and gave me a whopping dose in a shot of steroids and a presription of them to come home with! They were the only things to help me the last time this happened to me--and I had relief already literally within hours that time but had to stay on them for several weeks before the symptoms stopped coming back when I would get off them. I hate steroids because they make me fat and swell up--but the relief from this agony is just completely worth it... He also gave me a couple pills of a pain medicine called Vicodin which he said would help a lot too and gave me 2 pills of them in the ER. I am already feeling a great deal better although the symptoms aren't gone yet (obviously) but am extremely hopeful that within the next couple days I may have some real true relief from the steroids. (Why was it so hard for my fam doctor to do this?!) The ER doctor said he was probably scared it would mess up his blood tests or something... and he also said that if it gets bad again that I should not hesitate for one minute to come back there and they will treat me again. He was so kind to me and after all these horrible doctors I have dealt with up till now it was almost a pure shock! I am going to call the Dekalb Rheumy now. I used to live in Decatur so am familiar with that area too... hopefully he takes my insurance (I'll google him first as you suggested). Thank you so much again Omega for caring so much to help me--a total stranger, but one who is so grateful to you for caring!!! Nicki

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/18/2011 3:00 PM (GMT -6)   
I'm glad you've found relief, Niki.
Joy

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/18/2011 3:31 PM (GMT -6)   
Thank you Joy! I just woke up from about an hour and half nap--where I could actually get out of bed without cringing myself so hard. My limbs were still asleep quite a bit like when I usually wake up but not as bad! I am really praying the steroids work as nicely as in the past for me!!! I appreciate all of "you guys" support!!! It has really helped carry me through this very difficult time. Now I have to face my family doctor tomorrow with the question: Why did it take me going to the ER to get what could have happened weeks ago? And also... What plan of action can we take at this point until I do see a rheumy? Frankly, if I don't get a decent answer, I am switching doctors. We have been with them for almost 2 years--and during this time I have had to seek the help of most specialists myself because they never could or would do anything each time and I kept trying to give them a chance, but honestly, if your family doc is not your greatest advocate, then who is? I should have switched a long time ago probably, but he also treats my husband and has done well for his situation and I didn't want to "rock the boat" for him either.... Thanks again Joy!

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 4/19/2011 7:26 AM (GMT -6)   
hi!
I am so glad you went to the ER and wish you hadn't waited so long. Keeping a diary and a using a time line, can be as simple as a calendar with a jot of the current misery, and using the pain scale, 1-10 is a good idea because that is the pain standard they use in most hospitals. Taking pictures is a wonderful thing to do, and be sure to print them off and take copies when you go to your family dr. And I agree, I think you need to find a better one. I could really relate to the comment "feeling like a scolded child". And your pattern of illness is common to so very many of us. You are not alone. I had one thought, you could call the ER and ask when the dr. who treated you is going to be on duty again. Then call and talk to him, asking who he would recommend for followup, and qualifying it as, if I were your wife/sister/child? And ask medical records at the hospital  for copies of your medical record. My diary and reports were a blessing when I was applying for social security disability. I was terribly sick for 8 years before I was diagnosed, but it only took 3 months for my SSD to be approved. So hang tough.
hugs,
suetoo
ps. I have a 21/2 yr. old grandaughter that I can't chase either. I use a 'monkey pack" which is a little stuffed monkey/back pack combined with a leash. I know, sounds bad, but her safety is my priority and she loves to go outside. We never go far, and she loves her "back pack" for her stuffed pet. I also push an umbrella stroller so I have something to hold, and in case, as so often happens, she decides she needs uppy. I also have bells hanging on the back and front doors, just in case.
 

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. Vit. B12 2400 mcgs, Vit D 1000U and  Ambien every night.

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/19/2011 8:28 AM (GMT -6)   
Thank you so much Suetoo! Those are some great ideas for children! (And for me too!) I guess I will start marking off the diary/calendar just a quick 1-10 like you suggest. This morning I woke up without the excrutiating pain running through me!!! I was amazed to wake up feeling almost normal! I only just had the steroid shot yesterday around noon!!!! I am SO THRILLED!!! I really thought the steroids would work because last year I had a somewhat similar "episode" but not as bad pain-wise as this time (no rash, no bruising, no swelling, no blisters on scalp, etc.) and they had worked to relieve the symptoms. But I was still a little unsure of myself asking because it has been SO much worse this time and I was not even totally convinced that what is happening now was related to last spring--but the fact that I am feeling 100 times better this morning--I am even cleaning my house right now and have laundry running--the kitchen swept/mopped, the baby cleaning in his CLEANED UP nursery (tidied!!!) It is an incredible feeling after WEEKS of pure misery! Thank you for all your tips/help EVERYONE!!! You have made such a difference for me. Now I need to see what to do about future treatments/diagnosis... but one thing I know now for a fact: that steroids give me very quick and very adequate relief, and even if doctors don't like to put you on steroids, they are the one thing that really helps me. So I am going to come out strong and tell the doctors what I know works now and please help me come up with a GOOD plan and not just an inadequate attempt to control my pain! Thanks so much! Nicki

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/19/2011 8:36 AM (GMT -6)   
omega said...
If you live in Atlanta, try Dekalb Medical Center. The Rhumty is specialized in lupus. You can call his primary centre and ask if they accept your insurance. The phone number is 404-299-0187. I do not know if I can give you his name in this forum. The first letter of his last name starts with a B. You can google Dekalb Medical center and search for "doctor." Then in the box, choose Rhumentology. His name is the first on the list.
I hope you feel bteter soon.
Hi Omega! I did find Dr. "B" for lack of better words... but they don't take my insurance... I am so sad! He did look really good for the information I saw online about him...
I may try calling some of the others listed though and see if any of them accept my insurance. Something has to give because the steroids I got from the ER are only a week pack of medrol and although I am doing great today, I know all too well from last time that within a day or two of the end of the steroid packs the symptoms came back until I stayed on them for a longer period of time (almost 2 months last time) and then they gradually went away for a longer time.  Thanks again though Omega!  Nicki

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 4/19/2011 8:47 AM (GMT -6)   
A reasonable rheumy almost always prescribes Prednisone even before they decide on Lupus as the final dx. Drs who aren't rheumies tend to avoid Prednisone, but they simply aren't trained in auto-immune diseases.

And there is something else I wanted to say but apparently I have lupus fog this am as I have no memory of what it was!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 4/19/2011 8:49 AM (GMT -6)   
Oh, I know - if you click on "Lupus Resources" in my signature you will find several posts on how to deal with various aspects of lupus -- it includes a very extensive bit on how to prepare for a dr's visit.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/19/2011 9:14 AM (GMT -6)   
Hi Lynnwood! It is good to hear from you again!!! I am feeling SO GOOD today!!! Thank you so much for all your support! The ER doctor told me that he thought I was having a full-blown Lupus "flare" and that it was absolutely ridiculous for a doctor to leave me in that condition until November! When I called this morning though to let my family doctor know what happened at the ER yesterday, she said that he had been on the phone with several rheumies and although they don't have an actual appt date yet, they think it may be in a only a few weeks instead of months! I told her how much relief I got from the steroids already today!!! She sounded genuinely happy for me--so it really made me feel like they are actually trying hard and just hampered by protocols and insurance issues--not by a lack of care for me! I am going to go to the site you mentioned and make sure that I am properly prepared for this appt so that I can hopefully get onto the meds I need to be. Already, the steroids are just a miracle drug for me! I am also wondering about this Plaqueril many have mentioned if it would help too or not... either way, it is just simply a GREAT day to have this much relief after weeks and weeks of this pure misery!!!

Thank you again for ALL YOUR SUPPORT EVERYONE!!!!

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/19/2011 9:26 PM (GMT -6)   
Lynnwood said...
A reasonable rheumy almost always prescribes Prednisone even before they decide on Lupus as the final dx. Drs who aren't rheumies tend to avoid Prednisone, but they simply aren't trained in auto-immune diseases.

And there is something else I wanted to say but apparently I have lupus fog this am as I have no memory of what it was!
Hi Lynnwood, Are you out there tonight? I know you have had a lot of answers for me already!!!  I am real worried... the symptoms are all coming back real bad tonight (and I am on the first day of a 6-day medrol pack where I took 6 pills total today and had a shot of solumedrol yesterday (he said he gave me a real big dose but I don't know how much it was. When I remember back to last year, it struck me that the 36 hour window happened back then too where I had total relief almost and around a day and a half later the symptoms came back (but that time it was mostly numbness and other things--not very much pain at the time).  I am wondering if I need to try to get on something stronger tomorrow right away or if the medrol pack should be working? Last year, they hospitalized me on decadron (If i remember all this right because at the time I thought it was all something from having my baby and never knew it was autoimmune until the end when they did hospitalize me) but he gave it to me in a shot every so many hours at the hospital for a few days and then sent me home on it and then I really started getting better, but I had been on prednisone for quite a while before that (accidently because of a pituitary tumor that shuts down my adrenal glands/kidney function the neurologist had tried to shock my adrenal glands back into working) and that is when we had realized that the steroids were the only thing helping me. I don't know anything about these medicines and am pretty sure that you do! Does medrol work as good as other steroids or should I ask my doctor tomorrow if they can relook at the steroid I am on? I am ok at the moment since they also gave me a medicine called vicodin for pain which is helping a lot, but I am terrified that the symptoms are gradually getting worse again tonight and really starting to get bad now. Or does one have to have a shot for it to really work good at this point? I know you are not a medical doctor and suffer from this illness, but at this point, I am sure you would be able to tell me better than anyone because experience is the greatest teacher of all...  I hope you don't mind me asking. I will see what develops in the morning, but right now the pain is back in full force and other symptoms...  Thank you!!!  Nicki

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/19/2011 9:29 PM (GMT -6)   
By the way, Lynnwood, my husband and I really enjoyed reading the "spoony" story!!!  It was so funny and so true to what we have dealt with over the past 2 years especially. Also, all your tips and advice there were just wonderful! It is so incredibly wonderful to have this site and everyone who works so hard to keep it up to help us "newbies" out here that are just so surprised, shocked, and frustrated over our bodies apparent total dysfunction and to have someone to calm us and help us know what to do and what to expect has made this process a lot more bearable for me!!! Thank you again!  Nicki

omega
Veteran Member


Date Joined Jan 2007
Total Posts : 607
   Posted 4/20/2011 12:30 AM (GMT -6)   
Nikis
I am sorry to learn that Dr. B cannot accept the insurance your have. This is kind of sucks, but glad to hear that you may be able to see a rhumty much earlier than in Nov. I agree with Lynnwood that Drs who aren't trained in auto-immu disease tend to think Pred as a plague, but I think Pred is a necessary evil for us lupie. Anyway, I hope you continue to feel better.
DX SLE 1988; APS (Antiphospholipid Syndrome); High-Blood Pressure; Pred 2mg, Verapmil 40 mg bd (for migraine headaches), Cellcept 2000 mg;Omerprazole 40 mg; Warfarin; Calcium + Vitamin D 1200mg, Folic Acid 5 mg; Simvastin; Rampipril 1.25 mg

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 4/20/2011 7:09 AM (GMT -6)   
I don't really know if there are differences between the medrol pack and prednisone. I think the prednisone requires a little more processing in your body before it becomes usable, while the medrol is already closer to the natural prednisone produced by the adrenals. I do know that the dosages are not 1-to-1, ie. 1 mg medrol does not equal 1 mg prednisone.

Sometimes it is worthwhile to consider a doctor even without insurance. I know many people think that is impossible, but I'd rather be in debt than in the kind of pain it sounds like you have. Rather than rely on your dr to find a rheumy, I'd call my insurance company directly and see what they say. There are lots of good rheumies in the Atlanta and surrounding areas.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde
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