Hi I'm a newbie-my first post. I've read some of the other posts and feel fortunate to possibly have a dx in 10 months. I feel very frustrated and sometimes like I'm losing my mind. I have been to 3 gps, Physical therapy, a chiropractor, a PA, A FNP, a surgeon and a Rheumatologist. I've had dxs of nocturnal asthma, depression(who won't be), fibromyalgia and have just been thru 18 more blood tests for everything from Lyme , strep, lypus, EBV and parvo. No concreate conclusions. As I said all this is making me a little nuts and I've developed problems with anxiety and have had a couple of full blow panic attacks. My symptoms started suddenly last April 05. I had what I thought was the flu-severe muscle aching, fatigue and a headache for a month. I had all kinds of Blood work done and all that showed was an elevated sed rate. @ dr's later I went to a FNP who dxed fibro and sent me to PT. It really didn't help but she but me on elavil and ultram which seemed to aleviate enough of my symptoms that I could function a little better. The headaches started again in Aug. but the neck and shoulder pain never disappeared. The headaches were so bad again that it hurt to lay my head on a pillow. It was a constant just at different levels. So I went to the Chiropractor. This helped with the headaches, but still had the fatigue and neck and shoulder pain. Getting out of bed the whole time has been difficult.Some mornings I just have to because I hurt so much that the only relief is to get up and move. Then in Nov. I added to my weird symptoms and developed a fever, excruciating pain in my joints and muscles and a rash that the FNP said was erythema nodosum. I had painful red lumps on my legs(shins and ankles). She did a strep titer that came back + that I had had a strep infection at some time and put me on 10 days of Keflex. I felt better for a little while but still had head, neck and shoulder pain everyday. Then In Dec. I crashed again. This time the FNP put me on Cymbalta, Klonopin and prednisone. The Cymbalta made me violently dizzy and nauseated for 3 days. The Klonopin helped with the feeling of anxiety and helped me sleep. I waited to try the prednisone until I had the new blood work done-again an elevated sed rate and + ASO titer. I tried the prednisone and felt absolutely wonderful!! Those were the best 7 days I had in 2 months. After I finished taking it I gradually went down hill. She sent me to a Rheumatologist. She ordered 18 blood tests and a chest x-ray-again an elevated sed rate, mildy + RF and +EBV and + Parvo but no dx. During this time I had another round of erythema nodosum. Have felt real bad and discouraged with how slow things are moving-the Rheumatologist is a 200 mile round trip and I felt like nothing was being accomplished. I went back to the FNP and she put back on Zoloft. In the last week I have developed a new kind of headache.Throbbing temples and jaw pain. Got scared and went to see another GP. I mentioned that I thought maybe I had PMR. His immediate concern is TA and sent me to a surgeon for a temporal artery biopsy which I will have Friday. I am so sorry this is so long and drawn out but I feel better for doing it. It has been so frustrating to have to deal with all this BS and wonder-still wondering if I will ever get my life back. I am an avid gardener and it is my escape from the stresses of my job and it really stinks not having the energy to get out there. And I feel so sorry for people without medical knowledge having to tear thru this red tape to get to the root of the problem and get treatment for their illness. I am an RN so I have certain connections that have helped me. I'd hate to see what it would be like if I didn't have some of those connections. Sometimes you just have to be your own advocate and take control to get things done. Well before you all get terribly bored listening to me blow off steam I will shut up. Thank you for listening. Let me know what you think. Debi
Hi Debi,
I am glad you found a place vent a little. I am wondering why they didn't keep you on the prednisone if it helped you out. Most of us are on prednisone for much longer than 7 days. I think I would have been very concerned about TA once the severe headaches came. The reason my doctor started me off on 60mg right away was because of the concern for TA. My prayers are with you and I hope Friday will give you a little more information to work with. Prednisone can definitely be a miracle drug inspite of its side affects. Take care and keep us informed. Thank you JMRB for sitting thru all that. It was the FNP that put me on the Pred. I think as more of an experiment. She feels that I have an auto immune disorder(RA, Lupus). But test results by the rheummy showed that I don't. I am hoping for some answers fri. as I think not knowing is worse coz nobody wants to do anything that might help in fear that they may make things worse. Thanks again. Debi
Debi,
I am so sorry that you have gone through so much frustration!!!! You must be beside yourself!
It's good to have you here..........don't feel bad about venting; I think it's a valuable forum where we can certainly learn from each other, and more importantly, offer support for the bad days!
I did go to a Rheumatologist once, but but he blew me off. At that time, I think I was in early stages where I was difficult to dx. As my symptoms became worse I chose a neuromuscular MD, partially also because I have peripheral neuropathy and a hx of seizures, and white lesions on my brain MRI that no one seems to know the etiology of. So I thought his speciality was a good combo, and I'm very happy with him.
I will keep you in my prayers that your biopsy will go well, and hopefully you will have no signs of TA! I'll tell your mountain how big God is!!!!!!!!!
Hugs,
Hopalong
Dear Debi, Firstly I also am an RN in Sydney and it seems that there are quite a few in the health profession on this site. Are we more susceptible??? My rheumatologist said that if you reacted well to the prednisone even if the ESR was not raised then this was virtually a dx of PMR, because it is almost the only problem that reacts so positively, so quickly to prednisone. I am also baffled why he did not continue with medication. Weaning off the prednisone is hard and it seems many of us have to go back up again because of relapses, so i have read the info with interest on one of the other notice boards. Does anyone else split their dose of prednisone to am and early arvo? and does it affect your sleep pattern even more? Also Debi, thinking of you and write anytime, we are all listening and looking for answers , acknowledgement, and support. HUGS PeachesHi, Peaches -
I'm new to prednisone (2 wks), but for now I'm taking 10 mg. after breakfast and 2.5 mg. before bedtime. So far, I have had no problem sleeping. I started at 10 mg/day, got great relief, but was still experiencing a certain level of stiffness, so tried 15 mg., which seemed more than enough, so have gone to 12.5. Are you weaning yourself now? Did you see the link I posted on another thread on weaning from prednisone - I found it very informative.
dear Ruth. Thanks i read with interest about the weaning of prednisone. I am also on 12 1/2 and forgot this am to spread it over 2 doses but had a shocker last night. Did not get to sleep until 4am and woke at 730, but strangely enough I had a pretty good day today. I will do as you are doing as I was advised to stay at this level for 2 weeks, therefore another week, and then go to 10.
From 10, previously, I went down 1/2 each week but this was obviously too much as when I made 8 it was up to 10 for 4 days with no improvement then 15 again for 2 weeks. Will try
Thanks Ruth From Peaches in the 'burbs' of Sydney
Hi I had my temporal artery bx done yesterday. All went well but I will have to wait for the results. It seems my artery was deeper than most so he really had to dig for it. The anestesia guy gave me some decadron to keep me from swelling too bad and I'll tell ya, I woke up feeling like a million bucks. No headache, shoulder or neck pain! Decadron is a steroid. Even after the pain medicine he gave me wore off I still felt great! I'm tempted to start the prednisone I have here from the trial run in Dec. but am reluctant without the Dr saying to start it but then again what could it hurt. I'm still deciding. But everything went well and I'm glad to have it overwith. Thanks again for listening. Debi Debi: I'm new and was just reading about your problems. Did you ever hear from your biopsy? When you mention TA - is that Takayasu's Arteritis? I have this and just wondering what you found out. Hope you are feeling better. Texas LindaHI Just an update-The temporal artery bx was negative thank God. Meet some friends at the coast last weekend and walked all over Charleston and actually felt good!! The Dr. started me on prednisone 40mg. It brought my pain level down to a 1-3 from a 6-7. It was wonderful to wake up in the morning a be able to move, not have a stiff neck and shoulders and a minimal headache. I got off the NSAIDS during the day and am now weaning off the night time stuff(ultram). Just taking Tylenol arthritis at times. I am having some insomnia from the pred but at least it's not pain waking me up. I have cut down to 30mg and am going to try going to 20mg next week. I hate having to take the stuff even though it works. I had a battle with my wt(lost 45#) and do not want to gain it back. And of course the the threat to my bones makes me unhappy so I've started a CalMag supplement. I'm not feeling crabby like some people do. Just so happy to have a decrease in pain and a little more energy after 11 months of this crap! I'm just thrilled that I'm almost feeling human again. Still feel a little fuzzy headed at times and I think it's from the pred. But I guess it's better than the other.