Anyone with this problem?
Posted , 5 users are following.
For twenty years or so I have been living with ME/CFS. At least, that was the diagnosis. However, every now and then I find myself wondering if the doctors got it right. Is that really what is laying me low and messing with my brain? Early in this new life I heard "It's all in your head" before I found a doc who listened to me and diagnose me with ME/CFS. But even now I sometimes wonder. Did he get it right? What's? wrong with me, anyway? My question: Do any of you sometimes doubt your diagnosis?
Do any of you sometimes wonder if "they" got it right?
1 like, 13 replies
paul75665 phillis55984
Posted
Hi Phillis
As far as I'm concerned no you are not alone in doubting your diagnosis, I definitely doubt my diagnosis of CFS/ME, which now seems to have developed into Fibromyalgia according to my doctor. I've been having alsorts of symptoms going on for the past 2 years, and while CFS/ME can be a cause for them, there are other possible causes, which my doctor is always keen to dismiss due to the extensive testing and investigation I have gone through to date. I've got an MRI scan on my head in a few weeks and been referred to see a Rheumatologist, as part of my ongoing investigation. Whether these tests / examinations reveal anything is another matter, personally I am doubtful anything will come from them.
I guess it'll be a case of trying to accept what the doctors say, but there is always 'what if's' going around my head, and I feel like I just constantly waiting for something else to happen. To me my diagnosis is a hard thing to accept, and I don't know if I'll ever be able to accept it, all I know is I'm finding it quite hard to live life this way!
I hope I've helped you feel like you are not alone, take care and all the best for the future.
phillis55984 paul75665
Posted
Thank you, Paul. It always helps to know others have the same issues.
I have a hard time expressing what I, occasionally, feel about this illness.
I think that sometimes I doubt myself--wonder if I am just being a wus.
Then something else happens and I let go of that. But the doubting issue comes up about once a year. One time I had my doctor write, on his prescription pad, that I had CFS so I could look at it now and then when I was feeling unsure of myself. That did help. But that was many years ago, and that dear doctor has retired. Yesterday I was able to take my dog for a slow walk in the neighborhood. By the time I got home, all I could do was flop on the sofa. Tomorrow I want to visit a friend I have't seen in a year. But when I phoned her, I had to tell her that if I was to wobbly in the morning, I would call and cancel. She understood. Oh how I long for the days when I wasn't stuck in the house most of the time! When planning to visit a friend was a simple thing. Ah well! These ME/CFS blues will be gone by tomorrow! But they sure are nasty when they hit. It is not healthy to doubt oneself, and the last few days I have been doubting myself. Thanks for writing.,
dawn94288 phillis55984
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I so relate to wishing I could make plans with a friend and know that I could come through for sure. I so much appreciate those few who seem to understand. It hurts that my adult children mostly don't get it. They remember the old energetic me. I can understand why people don't get it though, because they aren't in this body.
Patrickgeoffrey phillis55984
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Patrickgeoffrey
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Patrickgeoffrey phillis55984
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phillis55984 Patrickgeoffrey
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Thank you for posting, Patrick. I try very hard to stay positive and help others stay positive, but the last few days have been difficult--mostly because I have been doubting myself once again. Could I do more if I really tried? Then I "really try" and am flat on my back for several days. Stupid, huh? I once had a remission that lasted three weeks! I thought I had beat CFS! You should have heard me whine when it came back! At least no one was here to hear me throw a hissy-fit!
Now any remissions I have are half-way dealies that, if I'm lucky, last 2 or 3 days. Guess I just need to be grateful for those days off and stay focused on the positive. I can do it! I'll take a look at the research you posted. Thank you for that.
jeanp phillis55984
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And then with the ups and downs, which sometimes are because I have done more/rested more, but other times seem totally random, I start thinking what did I do? was it something I ate? No rhyme nor reason, sometimes.
But as patrickgeoffrey says, there is good hope for a dignostic test in the not too distant future, so that will help, and perhaps give an insight into what is going on in our metabolisms. But with CFS, seems nothing is that straighforward: it likes to keep us guessing, I think! We can only keep keeping on.
phillis55984 jeanp
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Years ago my mother was diagnosed by a neurologist with MS. Later, her family doctor, who disagreed with this diagnosis, started her on B12 shots. She recuperated. Had to get periodic B12 for several years after that as her system was not absorbing B12 from food or vitamins. She referred to how she felt after the shots as "raised from the dead."
I've had my B12 levels checked. According to our local lab they are not low. Drat! I had hoped that might be at least part of the problem. I totally agree with you that "...with CFS, seems nothing is that straightforward." Today, however, I think I am just paying the price for taking too long a walk with my little dog yesterday. Oh...and about a month or more ago, I had a day when I felt perfectly normal. I mean 100% normal! I almost cried with joy! Went walking with my dog enjoying every moment, and tripped and fell on my face. Took the skin off my nose and sprained my wrist. Screwed up my glasses. Duh. That had been the best day I had in years and years until that fall. So oI ask myself, "What the heck am I supposed to learn from all this besides pick up my feet when I walk?"
phillis55984
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Miswrote: The neurologist didn't have MS. My mother was told she did.
dawn94288 phillis55984
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Phillis, I just have to ask you, did you ever get to try the B12 shots yourself? As soon as I was diagnosed with CFS my internest prescribed them for me because he had heard that they help some people. Fast forward to years. I just tried going off of them. I suspected that they were not really doing anything. But, as it turned out, I found that they were making some difference. I was not nearly cured, but it helped. I'm suspicious of the genetic connection between you and your mother. It might be something that would help you.
phillis55984 dawn94288
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Yes, I did. A long time ago before I was diagnosed, and they helped whatever ailed me at the time. However, sinice the CFS diagnosis and since the lab checked my B12 and said it was normal, the best I can do is use the sublinqual B12 because the doctors won't prescribe the shots. The subllingual B12 is as close to a shot as I can get on my own. Of course, we know that one person's "normal" may not be another person's "normal" but try to convince Medicare and the lab. It was a no go.
dawn94288 phillis55984
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