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SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 1/27/2009 6:25 PM (GMT -7)   
nurse2 said...
Hi. I'm new to this site. I am 52yrs. old and I have lupus, sjogrens's disease and fibromyalgia. Last May I had my fourth spinal surgery due to degenerative disc disease. I was diagnosed with Lupus and Sjogren's at Mayo clinic 4 yrs. ago after 30yrs of doctor hopping to get someone to listen to me and get some sort of diag. These last two weeks I have felt horrible. I went to a new rheumatologist 3wks. ago to see if my current treatment was the right one. She insisted on doing all of the blood work all over and said that on that particular day my worst problem was fibromyalgia and bursitis in both hips and shoulders. I talked to her about pain control meds......I very rarely take pain meds because they are so hard to come by and I try to save them for the horrific days. She totally dismissed my question and said to come back in a month for the results. I am frustrated beyond belief. Does anyone have any suggestions?
 
Welcome to this board, Nurse2. When I get frustrated I ether wind up calling someone or I do freelance poetry.  As for the pain, perhaps ask the doctor again. If they fail to hear you, request a second opinion. Sometimes a little threat of wanting a second opinion can go a long ways. Best of luck, welcome to the site, keep us posted!
 
Smurfy Shadow
 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux
 
Medications: CellCept, Prednisone, Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D


nurse2
Regular Member


Date Joined Jul 2005
Total Posts : 229
   Posted 1/28/2009 11:09 AM (GMT -7)   
Thanks so much for your note. The new doctor I saw a couple of weeks ago was a second opinion. She asked me what my lifestyle was like and when I explained that I was no longer allowed to work as a nurse but that I helped take care of my mother who has advanced Parkinson's disease and Altzheimers and that my husband and I were semi-raising our 2yr. old granddaughter because her mother worked and was going to college....she said I needed to totally change my lifestyle and exercise. I will continue to take care of my family regardless and the only exercise I can do is walk a little. I was a little disappointed when I left there. I knew that no "lightening bolt" would flash and she would have all of the answers but surely there is something to help someone in my position that really can't do a big lifestyle change because of family responsibilities. Oh well, I see her in 2wks. so I'll see how it goes this time. I'm really not a person who complains about things but I thought talking to people who are in the same positions would do me good. There are no support groups in my small town. Again, thanks for your note. Hope today is a good day for you.

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1551
   Posted 1/28/2009 12:31 PM (GMT -7)   
Hi Nurse. I have a BS in medical technology, but I'm now on disability. Isn't funny how much you miss working? Many of us list our diagnosis and meds in our signature. Are you taking prednisone? It's the med we all love to hate, but it can really improve lupus symptoms; not fibro though. As for the pain I've been taking Celebrex (prescription) for a few years and it's a big help. I also take Tylenol Arthritis daily, neurontin PRN and I've had good success with acupuncture. Eventually you'll find the correct mixture of meds for you and you will hardly need narcotics. I sure hope that you are at least taking plaquinil. Keep us posted on how you're feeling. Our group is very supportive and a great resource for info or just to vent. Welcome to our forum Nurse! Love, Butterflake 

Systemic Lupus ('05), depression, diabetes, fibro, gerd, hypertension, IBS, sleep apnea  Rx: Cellcept, plaquenil, prednisone, celebrex, lisinopril, actos, lipitor, nexeum, prozac, seroquel, wellbutrin, actonel, tylenol arthritis, neurontin, phenegren, flexeril, vit C, multi vit, flaxseed oil.  Acupuncture  "Welcome to lupus, where the strange is ordinary and nothing is normal." Donna 
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/28/2009 4:39 PM (GMT -7)   
Hi nurse2,
 
Donna(Butterflake) has it right.  If you're on prednisone, it could be making your Fibro pain worse. If your blood work comes back looking A-OK, then the pain you're having is from your Fibro.  You won't get abnormal blood work with Fibro.
 
I also have a rheumy who thinks that just because I have Fibro means I don't hurt as much.... WHAT?  I hurt more with Fibro than I ever have with Lupus.... I'm done trying to talk to her about my pain issues.  Seeing a pain specialist might be a good option for you.  I'm sure thinking about it for myself.
 
Take care!
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Moderator for the Lupus and Fibromyalgia forums


nurse2
Regular Member


Date Joined Jul 2005
Total Posts : 229
   Posted 2/3/2009 7:05 PM (GMT -7)   
Thanks Butterflake and Ginny for your note. I am on Plaquinil, Neurontin, Lyrica, Vit E, Relafan, estrogen replacement, Nexium, Singular, Pulmicort(for asthma),Requip, a new Vit D supplement because I can't seem to keep my level up, and right now I can't remember what else at the moment. This is another Fibro fog day. I rarely take any pain meds because I'm in pain 24 hrs. a day and I save the med until the headaches are causing me to vomit. I went through 2 yrs. of chronic vomiting because of a pinched nerve in my spine. I've had 3 nerve ablations now and the headaches continue. The new doc I saw is in Columbus, Ohio which is 2 hrs. away from me so if she doesn't make me feel warm and fuzzy this next time there is really no reason to drive that far to see her. I can continue to see the doc in town. I was forced to leave nursing after my second cervical surgery and started working strickly in our front office (my husband is a pediatrician). I hated the office stuff but at least I was still able to see the patients and be involved with the families. After surgery number 4 I was told never to work again. I am only supposed to use the computer for 30 min. a day so my neurosurgeon has listed me as totally disabled. I can't drive more than 5 miles without wanting to throw up. It has really taken away my independance and that is very hard for me. I have started the online disability request but it has taken me 2  mon. to complete the first part. Heaven only knows how long it will take me to finish it. Oh well, tomorrow is another day, right? Hope today was good for you..........
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