hello all, i am a 49 year old who was diagnosed 4 years ago with SLE I also have osteoatritis.Prior to that they said i had fibromyalgia. I have had a full term still born, 2 neonatal deaths, 2 blood clots on my legs and a PE. I have 3 children, but my youngest has diabetes type 1 and learning difficultes. My husband has just been diagnosed with a brain disease called FTD which has broke my heart. I have always had pain in my joints, suffered from fatigue, mouth ulcers etc. Due to the amount of stress just recently i have been feeling terrible. My Rheume is great and has given me the steroid injection and i can have another one in 12 weeks time. I have been having problems with my heart, tachycardia with possible atrial fibrillation, i take a beta blocker, and awaiting futher tests. I am taking hydroxchloroquine Sulphate, naproxen, and tramax gel. The problem i have now is i have been suffering from vertigo since last dec, trouble with my neck acheing, ringing in my ears, and my arms and finger are often numb or tingling. i have had an Xray (no obvious problems other than wear and tear) so my Rheume has arranged a MRI. My last ANA was negative, but i feel so tired, everything hurts, everything is a tremendous effort, after my last injection i felt good for a while, this time i feel worse?? I do try to get on with my life but feel thing are no better. i am worried about the MRI as i suffer from claustrophobia.I just want to be well not tired all the time. people tell me i look ok, but make up and clothes do not take the pain away. Sorry for the long intro.
I am so sorry to hear about all of your suffering and that of your family as well. I am glad to hear you like your doctor - having a good doctor goes a long way.
I have had to have several MRIs over the years and am also claustrophobic. What I found really worked for me was to take a valium and bring a non-wired eyeshade. I wear very comfy clothes (wirefree). The combination of the relaxing drugs, having my eyes covered, and wearing the ear plugs they provide helps me zone out and I forget that I am in a tunnel.
Good luck with your MRI. I hope you start to feel better soon. Being tired all the time is frustrating and I can relate to the frustration of looking ok on the outside but feeling like a complete mess on the inside.
The Following User Says Thank You to lrs76 For This Useful Post:
Thank you for the advice, i am just dreading it!!! i am hoping the doctors will prescribe something as i know i will panic, i cannot stand going under the bed if i drop something!!!
Oh...gosh... honey, that's just horrible. I'm so sorry that you're going through so much, it seems like you're having a harder time with your health, even than many others here. I do hope that you find something that works for you soon, so you start to feel better. And yes... it does seem that people think if you dont look sick, you must not be, which of course is ridiculous, and kind of hurtful.
Hope your MRI goes well - maybe you can try to relax and zone out. I hope it goes better than you think it will.
Best of luck, and welcome to the WHL forums and family (:
The Following User Says Thank You to Elo For This Useful Post:
I want to say hello and welcome you to WHL. i am sorry to hear that you have so much going on. Stress makes things even more difficult on us. My heart breaks with yours at the loss of children. I had 4 as well but none as far along as yours. It is just devastating when you watch or hold your child knowing that he will never experience life. I it is something that stays with you always.
As for the Lupus Diagnosis... it doesn't change just because your blood work does. Our blood work may go back to normal due to meds or lack of flares but it doesn't go away. If my personal opinion any doctor that doesn't understand Lupus at all. They may say they do but that don't understand the hills and valleys that we take on this ride. The good news is that you are now part of our WHL family and we understand it completely. We will be here for you as long as you will let us
Success is not final, failure is not fatal: it is the courage to continue that counts.
The Following User Says Thank You to tgal For This Useful Post:
i wanted to say welcome.
we are like a cyber family here.
i am happy to offer my shoulder and ear.
The Following 2 Users Say Thank You to steve.b For This Useful Post:
bubblies (08-07-2011), tgal (08-06-2011)