[SongMom]

I know I keep putting off going to the doctor b/c I keep wondering if it'll be worth my time and money.

But days like today, I KNOW I'm gonna have to break down and go sometime. I think I'm just gonna have to march in there and insist they keep looking until they figure out what's going on!

I am SICK AND TIRED of feeling like this! I just spent the past two days cleaning and rearranging the house... and I am COMPLETELY wiped out! Now a certain amount of tiredness and achiness is to be expected, BUT NOT TO THIS EXTENT!!! I feel completely exhausted and my legs--especially my hips--are WAAAAY too painful. When I got out of bed this morning I felt like I could hardly move. And my brain feels like it's completely shut down--like even thinking takes too much effort. I feel this way anytime I "push" myself physically--which doesn't take too much anymore.

I have a dx for "mild" hypothyroidism--but that's been under control for a year or two now. I don't think that's what's going on here!!! It's not "old age" either (which my GP has "joked" about) because it hit me suddenly at the age of 35! And if I feel this way in my 30s, how will I ever REALLY make it to old age? I am SURE everyone else doesn't feel this way. If they did, nothing would ever get done it the world!!!

I can't live like this!!! How can I have any kind of life if the slightest little thing bowls me over?

Thanks for letting me vent...

 

[sam101360]

Hi:

I assume you are in the US? So you have insuirance? If so does it require a referral? If you do and it does, I would press my Dr for a referral to a Rhumy, just for piece of mind? Because I know my body? Because I would really like to have a second opinion?

Now if you don't have insurance, this can be a bit more tricky...you could try a university hospital...You could find a Rhumy and explain the situation and negotiate a fee that is affordable or a payment plan...

I really think a Rhumy is the best place for you to go to get an answer, obviously one that specalises in Lupus would be the best of all worlds.

Hope you get some assistance soon!

Stephanie

 

[Clare.T]

Hello songmom

I can only refer you to your very first post just over four years ago and the advice given there and often repeated.

http://www.thelupussite.com/forum/showthread.php?p=296602#post296602

I think you are spot on in your first two paragraphs of this post. We can only continue to encourage you to do your best to get some answers. Sometimes an immunologist is better than a rheumatologist. If you have any recurring skin problems a dermatologist could help, maybe even a biopsy which can show vasculitis ( fingertip bisters) or even show lupus on unexposed unaffected skin.

I don't know when you last had any tests done but if it is more than a few months ago it is definitely worth having them done again
I look forward to hearing from you again after you have taken the first steps and decided on follow up. It is extremely difficult to get a lupus diagnosis if there is is no abnormal blood work at all and often hard to get any further if the ANA is negative.
A trial of Prednisone might help indicate an inflammatory process and see what, if any, symptoms are helped

In cases which can't be resolved despite making every possible effort and exploring all avenues and so on, the only recourse is to treat the symptoms

Good Luck
Clare

 

[helloos]

HI Sarah

I know it is difficult sometimes and even at times you want to give up when you know there is something wrong but have no answers.

A lot of people go through many many doctors and sometimes years before finding a doctor who will listen and/or find some answers.

What you have to remember is none of these doctors are going home at night thinking, that poor Sarah, something is wrong with her and I am going to find out what. They go home to their families and do not think twice about your appointment. There is only one person that is going to care about how you feel and that is yourself. "You" are your own fight. "You" will be the only one that will be able to pursue this and find out what is wrong. Don't give up otherwise, you will be feeling like an 80 year old but in fact in your 30's.

I am in my 30's and feel like an 80 year old but I also have some doctors that are at least trying to help me. I am hopeful that the meds will work and that some day I will feel a lot better.

But I had to go through many tests and many doctors and not giving up to find out that I had Lupus.

I had a few doctors that were a disgrace to the medical field. For instance, the heart doctor telling me that I did not need to look as skinny as the models on the front of the magazine, when I was there because two doctors sent me because my blood pressure was dropping when I got up and layed down and got up. He didn't even check my blood pressure laying down and then up again. He said I looked fine so see ya!

Another case - a rhemo said in his notes that I got copies of "suspect Lupus but will wait for something more dramatic to happen" Uhhhhh that wasn't right either. I live in Massachusetts and here you usually can see different types of doctors to rule things out and usually can find a doctor who is willing to listen to you.

So - try again and again, until you have found someone you are comfortable with.

Hope you feel better soon and let us know how you make you.

 

[halfpintfl]

Hi Songmom, it's been so long since I remember seeing you on this board, unless I just havent been looking. It so
good to see you back. BUT no in pain. Hon, nothing has changed in four yrs, get a grip. I am leaving you with no choice----phone your GP tomorrow and ask her for a referral to be seen by a Rheumatologist. The idea about seeing one at a university or a teaching hospital is a great one, I think , but that is because I think that is where the best ones are at. To each his own. Please, sarah, please, call.
You have put things off long enough, don't let someone say, "She put things off too long. We are here to support you in any way, and will do whatever we can. We just want
you here. (((((hugs)))))xxxxooooo:wink2: ​