Hi, SweetxK, and welcome to this group and helpful forum. I want to apologize for ignoring your friend request earlier today, but I didn't know who you were, and sometimes people come to these forums and send friend requests but aren't here for the right reasons. If you send another request, I won't ignore it this time.

I have an autoimmune disease called Polymyositis, along with Lupus. It is quite common with AI diseases that diagnosis takes a long time, which is very frustrating. The emotions you're experiencing are also normal--it's like going through the "grieving process" because the diagnosis and symptoms are difficult to accept. For me, the most difficult thing to deal with are the limitations. I was always a Type A personality, so slowing down has been rough. However, because I am a person of faith, I've reminded myself that the Lord is in control and has allowed these diseases for a reason. Maybe He just wants me to relax a little in life. ;)

Some things that help me are--(1) Looking at what I can still do, rather than focusing on what I can't do; (2) Take naps when necessary and possible; and (3) Fight with all my might by researching online and looking for natural ways to feel better. Hope something I've said will help you. Best wishes for a better tomorrow.

SweetxK,
Welcome. I too have been told I have dermatomyositis for a while, now told I have overlap, likely lupus and maybe scleroderma. I was diagnosed last Aug. and felt validated to have a diagnosis, that it was not all in my head.

I do not work, as the demands were too much for me. That alone, not working, is a huge change for me. I was used to moving at a fast pace.

I try to be easy on myself, am thankful for the small tasks that get done. I think it's a continual journey, as every day is a new slate. Forgive my jumbled thoughts, as I am experiencing some serious brain fog as of late. Take care.

Hi and welcome to this club. I for a very LNG time knew something was not right and doctors always made mw think I was just making thing up. I have had some very unusual conditions, but eventually it was found that I was not crazy. So the good thing now for you and all of us who finally got a diagnosis, we can get treatment and also have validation.

This does not make it any easier adjusting to a new way of life. Like you I was very active, running was my favorite thing to do. It my stress releaser. I tried to continue to run after being diagnosed, but found it harder to do each day, my usual run was 6-8 miles a day. Then it dropped to two miles, then had to stop for a while. It has been almost two years, the first year I was told MCTD, now Lupus.

I have return to taking Plaquenil and hopefully I will be able to walk a few miles a day. I have found that if I can do a little, I feel better. But I also now allow myself to take a brake and just lay on the sofa should I need to without feeling guilty.

You have to be good to yourself, then you will be good to others, but this will all take time. Feeling depressed also normal, I think being diagnosed with Lupus , you will go through the 5 steps of the grieving process.

As time goes on, you will find what is good for you. Everyone with Lupus will have different reactions and different symptoms. Lupus has so many different faces.

This is a great forum with lots of very informative and supportive people.

Feel well, bb

Hi SweetxK and welcome. This is a very good group of people that share things that have helped me alot over the years. I have found that the best way to deal with this disease is start fresh with a new life because the old life is no more. I use to be able to throw bales for cattle and horses and sheep. Now I am lucky if I can even open my own jars. Some days are better than others but I had to grieve my old life and start fresh knowing my new limits. Reading the Spoon Theory has really helped me realize my limitations and understand it more. You also have to be really patient with yourself. I am once again a very positive person although on bad days I am very hard on myself. I know things like if I mow the lawn that I can only do the front one day and a couple of days later mow the back. It's not that I have to mow the lawn but I so enjoy the fresh cut grass smell and because our yard is flat it gives me a reason to go for a walk. Of course after I finish the lawn I am a wreck for about 24 hrs. I work Monday to Friday 9 to 5 and was blessed with the knowledge to do bookkeeping. I now have an awesome boss that understands that I can't sit all day. It is a small company so I get to take my dogs to work and once every hour we go for a little walk around the compound. It gets me moving so I don't stiffen up so bad. All I can say is don't be so hard on yourself. It's a new way of life and you will figure out what works for you. I push myself to cook as I live alone but when I cook, I cook lots so that I have stuff for lunch and dinner for a couple of days. I make things that I can add cheese to the next meal to make it taste a little different. I had to get a dishwasher as I couldn't stand at the sink doing dishes. You will find what works for you and then things will get better. Be patient and take a deep breath. It's gonna be a roller coaster for awhile but it is definitely worth the ride. You will realize you are much stronger than you ever thought you were. And we are here for those times that you just need to vent or need someone to cheer you on. Someone always knows how you feel and it's nice to share it so you know that others have been there too.

Thank you for the replies. It is nice to have a place to talk about it with people who understand how it actually feels to go through this. I have been having some problems on this site and I hope it resolves so I can participate more but the pages are loading very slowly.

Hi

I was mostly diagnosed last year but have been symptomatic for years. I was told that I may have lupus all signs and tests point that way and since being treated with planqenil I have felt the benefits and when trying to stop felt the horrible flares ce back. I guess the big thing is, is to try and stay positive, have someone or this group to talk to each time your feeling a symptom... People in your life who don't have it may not understand your not what you were but we do!

I personally explain to everyone my symptoms, when I'm up or down, I use the spoon theory ( great way to explain to people) and most of all Im proud to finally say see I'm not nuts!!! Validation as others have said is important, so is support and understanding your disease. Read journal articles or professional information to learn all you can, study what diets have helped, and monitor your body ( apple has apps for chronic suffers of lupus and others!)

By documenting how your feeling you can start to see what triggers more exhausted days and work with your body ! I have learned that cleaning the entire house, mowing and chopping trees in one day when I'm feeling good prob means I'm out for at least a week! I also learned quite early that the hot Australian sun an my body with medications = burns with hives and blisters!!!

Be kind to your body and if your active that's okay I still hike but in shade and not as long :) try other activities like yoga will keep your body moving!

Hope this helps xx

I am very interested in the apps you talked about. I will do a search but is there one that is recommended?