hi everyone, 2 months ago I fiinally got an appt set up with a Rhumie for today. I am pulling my hair our now trying to find someone who can help with my symptons.My BP was 102/68 due to I am so fatigued right now, am in that stage again. I also shrank 1/2 inch according to thier hieght thingy. I am to young to start shrinking I am only 46 for gods sake. The Rhumie I was sent to said there was really nothing he could do to help me right now cause my blood work looked ok even though I have most of the symtopns and was diagnoised with Lupus. I even took a pic of the malar rash I get so he could see what I was talking about. I was limping cause of the amount of pain in my kness and legs today, but when he checked my kness he seen no inflammation. Well that dont help the pain or even explain why I have it. The basic pain pills, anti infmammitories etc dont help that much and are very hard on the liver and kidney's. So Now I have to start again at the Family Doctors next Mon. The diagnoises was easy treatment is the hard part here for me!!! On to of all that I am so stressed out and not sleeping I had a month for haties. @ car accidents my daughtre and hubby .. both cars totaled, my home was broke into and all kinds of stuff stolen..so I am scared out of my wits at night cause I am home alone, and not sleeping well. And ofcourse still trying to work my schedule and keep up with life. Ok enough dumping. How can I get them to listen and treat me for this?? Any ideas?
I have to agree, as I saw the third Rheumie before I found one that could or would actually diagnose the lupus and treat. I am so sorry you are having such a stressful time right now. Sounds as though your plate is full. Have you thought about a dog for protection? I know I have a small dog, and I feel safer knowing that if someone tries to walk up or drive up, she is going to alert me. A little bit of security she provides is worth much more than the little trouble caring for her and she is good company as I do live alone. I never had a dog in the house before this one. Now I would not be without one.
hi teeha .......... terrible to read you have been thru so much!
i am sending positive thoughts your way! hope things turn around now!!! also hope your daughter + hubby are both okay (also hope the cars were insured ....... where i live you cannot drive without insurance, just cannot take a chance again)
re:aches ........have you ever heard of ....... Fibromyalgia? (i didn't have enough tender points ??? i don't think the drugs work the same for fibro as they do lupus - actually some lupus drugs make it worse .......... )
i do not always swell in the same joint as the pain ........ thank goodness otherwise i would be really puffy. generally there is major pain with the swelling!
PS: BIG WARM SAFE WISHES! everynight i meditate on feeling safe!
we live in quite a high crime area so i know how draining not feeling safe can be! we have a neighbourhood watch and patrol vehicle now .......... also had an alarm put in! dogs are let out + in at night for their business! we keep them safe too! but they are really great - the jack russel in our group is the alerter .......when he barks i check!
how long are you alone for?
can anyone come stay a few nights?
Teeha, hi. I'm only a patient, but one thing you said made me blink. Personally I think you can have a LOT of joint pain without visible swelling. My joints rarely swell, only elbows; yet I have significant pain in multiple joints & have had it for decades. Also along long bones (shins & arms).
You said you received a formal Dx of lupus. Were you put on any LUPUS meds? Or were you only told to take OTC's?
I'm sorry you're feeling so punk. Also that you've had such a horrible cascade of events. I hope I read your post correctly, that you & your loved ones escaped major bodily harm! If so, I'm still sorry for your fear & stress. I hope that as the days pass, the horror keeps receding. Sending you a huge hug & my best wishes, Vee
Ya I had been put on Plaquenil and took it for 2 weeks before I broke out in a whole body rash. So that is not an option.This rhumie doc said he wont put me on anything until my blood tests change and he wont retest until a yr passes. So I am going to my Family doc and I am going to nail him to the wall with ok now you have to treat each and every sympton I have or find out why I am having them and treat the cause! Now in the last post I dont remember who posted (my appologies) asked if I heard of fibermylgia..yes I have and will research that also. I have a hard time at work. I drive a forklift and often have to drive backwards and this causes great pain in the muscles in my neck and then I get really sever headaches and want to throw up. If only I go drop my life and run to the doc the moment a sympton changes or appears. sighs.
I also get a lot of joint pain but very little swelling, I have a great endocronoligist but my first visit to the GP today was a tragedy ( I will be looking for a new GP ) I said to him we need to look at some sort of pain management because I am just in constant pain, He said look lupus is not the worst thing you could have, I would not like to have it but as far as I know it is not painful. I nearly fell off my chair I was so astounded. I will source a new GP in the morning. Good luck sweetheart I truely hope things get better for you.
Well the Visit to my GP went very well I think. Told him what the Rhumie said, and then straight faced and very seriously looked in straight in the eyes and said so what are you going to do about this. We discussed the symptons I am having the worst time with ie the pain, and the aniexty right now today is the worst. With all my hypersensivity to meds I deal with we came up with..... Cymbalta which traditionally is for depression, but they have also discovered that it is highly effective on fibromyalgia pain.Which he is not ruling out. It should help my pain or at the very least help with the depression/ aniexty. He said it should take about a week to get into my system enough to see a difference. We also choose to give me Advair forthe inflammation in the Broncil (SP?) tubes. Now that I can already tell the difference with. My GP knows I am very serious about getting feeling better, and he knows if he wants to keep me as a patient he will work for his money.
I walked in armed with old records on my back pain and hip pain issues dating back before 1999. He also did a thyroid blood test cause of weight loss issue or lack there of. SO I go back in 4 weeks and if the Cymbalta is not working as we are hoping we will do something else. Will keep you all posted on this.
Way to go Teeha....you took control of the situation. You are right....anti-depressants are used for fibro pain. I started with paxil but recently changed to cymbalta. I'm up to 60mg. Seems to work for me. Keep us posted on how you progress.
I made an appointment with a new GP today, he is very well recommended so we will see. I told his nurse I was coming over because The Dr I have been seeing was ignorant and had the bed side manner of a brick (hard and cold). My last doctor also suffered from auto immune problems so he was wonderful (I feel now like I was spoiled) He had to retire because of his health. I so hope this new Dr has a clue. Armed with info from this sight I will be very proactive.
Thanks to all
Ok results from my thyroid blood test. I have hypothyroidism. Which when reading is caused by 1 of 2 things..and the one being Autoimmune problems. So I started on Levoxyl today. Lets see how this goes. When my GP told me the main symptons I was shocked, Hair Loss, Fatigue, Weight loss issues. Gaining and not loosing. Being cold when everyone else is warm. So hitting this in a sympotnmatic way is what is going to get it done then so be it
Tess definately get proactive and do not take no for an answer, try all routes open and find news one to open if you have to.