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Discussion Starter #1
Hello guys,
Just came home from hospital yesterday after spending five weeks there, I had a miriad of tests and when I told them of my difficult chilodhood they imediatly jumped on it saying that my symptoms where all in my head, I was fuming I had all over muscle wasting and only walking with a frame they then came up with fibro, I read alot about and my partner got me a good book to read but i am convinced some of my symptons relate to lupus and not fibro but my blood tests are normal I keep getting mouth and nose ulsers.
Anyways its good to be back and I have a lot to catch up on on here.
Hugs Lisa xxx
 

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Hi Lisa,
Sorry to hear of your dx's and the trouble you had to go through with the doctors.
It seems that everyone here has gone through"its all in your head" and miss dxings. This disease is one of those that takes years before it rears its ugly head to be seen by the doctors.
We know how we feel and what is going wrong with our bodies but in order for us to get treated we have to convince those people in the white jackets.

Hang in there things will get better eventually.
 

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Dear Lisa, Glad you are back here. As we say very often the blood results don't tell the whole story. please do not give up.
x Lola
 

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Hi Lisa

Welcome back. It must be very frustrating for you to have had all those tests done and for nothing to have shown up. Can you get a copy of the test results?

Fibromyalgia is a very painful disorder. I have it along with Lupus. However it wouldnt explain your other symptoms as well you know. I seem to remember you also had some terrible itching as well?

As Lola said, dont give up. It may be that you need regular reviewing to see if any of your bloods turn positive. Thats often the case with people here.

In any event you have to deal with the diagnosis of fibro at this time. Are they proposing any treatment for you?

Let us know how you are
Take good care
Joan:rose:
 

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Hi lisa

I am so glad you made it back but sorry no diagnoses for lupus but as they say do not give up it took me like 12 years after finding out i had fibro that i also had lupus and most likely did then to.I gave up after finding out i had fibro to see if something else was causing me to be so sick for over a year along with muscle aches i also had where i was not getting the proper oxygen at all in me.I was at one point only getting 26%oxygen in me and after many test and lots of inhalers and doctors looking at me like i was nuts :mad: i just for some reason started feeling somewhat better and eventually stopped using the inhalers all together but over 10 years later.Well anyway i just hope you get somewhere faster then me but sure you will.There is a lot more info on lupus and fibro now then ever.

Tammy
 

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Hi Lisa, and welcome back. I have Fibro as well, along with Lupus. And I can say with no hesitation that Fibro
is also a very mean diagnosis. How long have you been trying for a dx?, sorry, but I don't remember. I also hope that they put you on some meds a.s.a.p.. I found that as for the meds, fibro is the same as lupus in that it takes a while to find just the right combination of drugs that will
work for you. You have my sympathies, lisa, cause I know that fibro is also a nasty, mean disease. I expect you will have a lot of questions, and I hope that all of us together can be able to help you. Pace yourself, and rest when you can.:wink2:
 

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Lisa,

I can hear your frustration in your writing. As the others have said Fibromyalgia is a real disorder and quite painful to live with. I had one doctor tell me that Fibro is more debilitating pain wise than lupus. I found for me that the statement is true. Once my Fibro got undercontrol I could at least dress myself again with easy pullovers and elastic waist skirts and pants. I could type on the computer again which is when I found this site.

It might be easier for the doctors to see what else is going on in your body once you get the Fibro undercontrol. What medications did they prescribe for you? If the answer is none please see your GP and get started on something. I found regular narcotic pain medications and even Nsaids just didn't touch the intense pain.

Take care,
Karen
 

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Discussion Starter #8
Thanks all for the welcome back :)

I seem to have been dx and then thrown out of hospital! I had hydro while there but they said it wasnt doing me any good as I was so afraid of the water and it ****** hurt! I have been put on Tramadol four times a day and naproxen and diazapam, an antihistamine tablet, mouthwash for ulsers and sore throats.
However the OT came out and did a home visit the bath board they gave me only fits at the opposit end to the shower head (very useful!) they said james would have to hold it over me, get drenched and soak the floor as we have a shower screen that is also at the other end!!!:rolleyes:
They have refered me to social services but in the mean time I will have to have a baby wipe wash instead!!!!!

I have been sent an oppointment for an echocardiogram, does anyone know why does fibro effect the heart?
I also read that fibro can preseed lupus so I must demand reg blood tests me thinks.

Great to be back
LIsa x
 

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I don't think if they know if fibro does effect the heart, but there was a study done at Ohio State that showed over 50% of people with fibromyalagia were also found to have mitral valve prolapse. People with MVP often have extra or skipped beats, but the overwhelming/vast majority of people with MVP have no serious heart issue at all. It is considered to be a very benign condition.

They may be referring you to have this done to determine if you have this condition, especially if they hear a heart murmur. This test will determine if you should have antibiotics before medical and dental procedures as a precautionary measure by determining if there is any regurgitation/backflow of blood.

Or it could be ordered for a completely unrelated reason! May not have anything to do with fibro at all.
 

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Oh Lisa thats terrible. I was at the Doctors today and he is really supportive and I was talking about my FM. He asked if I was a bendy woman (I do have hypermobile joints) and he said that FM is common in "bendy" people. He also said that he thinks that FM is a "dustbin diagnosis"! :mad: I asked him if that meant it was rubbish and he laughed and said no, he did think that some people do have FM but others are diagnosed when they cannot diagnose them with anything else!!! I'm glad that he agrees with my diagnosis - so much so that he is repeating all my bloods again to make sure that they're ok. Hope you get your condition diagnosed correctly sooner rather than later.
Lynn
 
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