Hi guys, I am absolutely shattered visiting family at the moment and it is really taking it out of me. I've got my cousins wedding Friday and right now I'm not sure I'm going to make it, I'm trying to rest the best I can but not having much luck.
I think my minds working overtime on the mis diagnoses as you guys know i have a butterfly rash across my nose and cheeks and I have blemishes where it looks like I've got a fading fake tan.
I know with all the other symptoms and test results it does aim towards lupus and that scares me more than Fibro if I'm honest. What if give to feel me again just for one day. Gentle hugs to all. Xxx
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Tinkerjack1912
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Aww love I know what you mean I have been overdoing thinking I could handle it n now I'm laid up in bed in agony so please take it easy and if you can't manage it love you are allowed to say no but if you like me I won't let others down love big soft hugs xxx
I'm so sorry you are having such a rough and exhausting time. It must be so frustrating not knowing what is really going on, but I hope your medics are doing all the appropriate tests etc., as you say it does sound a little like Lupus, but I'm not a medic so I can't really comment as you know.
All I can do is say keep on looking after yourself as much as you can and rest as and when you can, it must be tiring with the children, but perhaps you could ask one of your relatives to help with them so you can rest properly.
You know I am always here for you and I am sending huge huge amounts of positive healing, soothing and hopefully strength giving vibes to you and some more hugs 'cos you need them (((((TJ)))))
Try not to put what little energy you have into worrying.
I know it's so easy to say (and i'm guilty of it myself!), but worrying about what diagnosis you eventually get, won't change anything. By all means think about it and start to get your head around what it potentially means, but when you find your mind dwelling, try some distraction techniques.
Do you do any relaxation or meditation? This might help you. I hate having anything planned these days as I too worry about how i'll cope and get through it, but i'm proving to myself that I CAN. Mostly because i'm a stubborn cow. I know I will struggle and I might well collapse in a heap of pain and exhaustion immediately after, but as long as I don't try to do too much too often, the occasional thing I can do.
Try not to worry, I hope the wedding is enjoyable and I also hope you find out what's going on soon xx
Stress only makes fibro worst please only do what you can and excuse yourself out of what stresses you we are very fragile and it doesn't take much for us to have a major flare up that is one of the first things i learned about having fibro but it took me years of bedridden flare ups for me to learn that. Please rest and calm yourself we all know who afraid you are it ok I'm here for you when you need a shoulder to cry on for I have needed many to understand. love and gentle hugs
I am so sorry to read that you are feeling so ill at this time and I genuinely hope that you can find some resolution and relief to this issue. It really cannot be an easy time for you at the moment, and I can genuinely appreciate that you are very upset and concerned about the possibility of having Lupus. Life can throw all kinds of c**p at us, but it only wins if we let it! And you are a natural born fighter and winner! You are an amazing person who has struggled through adversity with a Fibro diagnosis, so you can beat anything?
Hi Tinkerjack I really feel for you, its such a struggle. Take all the help you can get, rest as much as possible and enjoy your babies! other things like housework can wait, do you have nice warm baths to help with pain? thinking of you and hope you can go to the wedding even if just for a short time.x
I am so sorry you're going through a rough ride, we are here to chat.
Please take time to relax and be good to yourself. We all live as best we can with this illness and all have times when we need extra support from others who understand - you're in the best place
I am not in the same situation as you are, but I am waiting to see a specialist too - for something else entirely though. I am prone to what is called catastrophic thinking (had to slow down to spell that one), which is dwelling on the worst case outcomes. You can have no real idea what is going on until you know. Still it's easy to worry. I keep thinking they'll find cancer, but they might as easily find a virus or something! I try to push the worry away as I know it only makes the FM worse to be streesd out. Living in the present isn't always easy. I find it hard.
So I wish you the best and hope you are feeling well enough to make it to the wedding. Could you go for just a little while then excuse yourself if you need to?
Just read your post and all the replies and wanted to say something to you but they have covered it all me thinks. It sounds like you have a lovely supportive family . Wishing you all the best with your diagnosis and remember treatments have moved forward greatly although I can't take away your worry I wish I could. This site amazes me at what lovely kind people there are out there and I feel proud to be a member of this site. ( although my replies still need some work to be as good) Thinking of you TJ and everything crossed for the wedding and for your diagnosis
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Too much
Just too much pain :(
Pain in my hips
