[nightbird]

Best wishes to all of you. I know it's a long journey to get a proper diagnosis.
It is still questionable as to whether or not I have Lupus or just Fibro. Just a bit of my journey to here may help you understand why I am not completely
diagnosed. I have been ill since my teens and last week I had the landmark birthday of turning 55 and for the first time in my life failed a driver's license test. OK, well when you have taken them for 14 different states and have moved 17 times in 22 years, you tend to forget to study. Also it is close to impossible to find a Doc in some places. I am trapped in one such place now.
However, I did get lucky, the md I got to take me on as a pain pt moved and gave me to an internist a couple of months ago. I really hope she will help me.
In the meantime I would like to post a few symptoms that I have that the drs who have seen me over the years have not cared to check into. In the past couple of years I have lost all of my hair, hair that took 2 days to dry in the desert, using a hairdryer has been pretty useless, I burned them out before my hair ever got dry. Now it takes about 5 mins and I don't even think about a dryer or towel. With that went my eyebrows, eyelashes, and any other place you can think about is as bald as a baby. With ever increasing frequency, I find I am so exhausted that just getting out of bed makes me want to get right back in. I know I'm old, but short term memory is, short term memory is well nearly gone. I can't stand heat, so I really love winter. It's a great excuse for me to wear a hat and keep the rest of my skin covered because I get rashes on parts of me that are exposed. I learned in the desert to always use lots of sunscreen and wear hats and carry an umbrella to keep out of the sun. I have lumps under my skin all over my body that I can reach. Some feel like marbles, and some feel like they run, but are still solid and will move if I push them. They are a bit painful. I have OA and after a couple of times in a single month I was in 2 rear ended hit and run accidents that tore up discs in my lumbar spine and were too large to heal, I kept tearing them so my option was surgery, just so you know, it didn't help.
I also nearly killed me. OK, have had migraines since I was around 11 years,
hypermobile joints, my knees are so bad that I can't even get in a pool because just swimming around they are so lax that I can't stand and just float around till someone can help me out. It makes stairs scary too, I never know when my knees will be naughty. I seem to always have swollen ankles and calves lately, buying shoes is embarassing. That is a bit of what is going on. It took nearly 20 years to get the Fibro diagnosis, but I never felt like they were going deep enough. Oh, I cannot take Sulfa meds. I'm exhausted and will not feel like I have rested again tomorrow. Sleep studies show that I have pain in my sleep, but nothing like Apnea to intefere with productive sleep. Never have deep sleep and if I nap I go straight to REM. My mouth is always dry too. For a lot of reasons my family is not living with me all of the time. Kids in college, husband travels and is out of the country 4 out of 5 weeks. They notice a change when they come back, but I have a few Provigil left from the sleep clinic and use those so they don't see how exhausted and slow I have become. If anyone had the patience to read this short novella, has questions or suggestions please write. I don't know where to turn. When we moved here 4 years ago, I had people around me like my family, but now they aren't here and this is the snootiest town I have ever lived in, in all of my years of moving and I'm stuck here. Just a bit of direction or a blunt, you are in the wrong place would be so wonderful.
Bless you all and take care.

 

[Joandublin]

Hi there Nightbird

Welcome to the Forum.

My but thats a long time to be looking for answers to your health problems :worried: Im just wondering, first of all, if you have been offered any treatment for the fibro?

Have you ever had an ANA (anti nuclear antibody) blood test carried out? Many times doctors are looking at each presenting symptom as an individual thing and not actually putting the picture together. That happened in my case for a while before I started to draw the picture together myself. Luckily my GP was great and very open to hearing what I had to say. It must be very hard trying to get proper healthcare when you are moving around so much.

I cant say whether you are in the wrong place or not Certainly some of your symptoms could be associated with Lupus or some other autoimmune disorder but until you get the proper testing done its impossible to tell.

Have you had your thyroid checked by the way? An underactive thyroid can cause some of your symptoms (including the hair loss) but yours does seem quite drastic.

It seems to me that you need to make an appointment with your doctor to sit and talk to him/her about your overall health. Perhaps tell him what you have said here. About how long you have been unwell and whether or not there could be some underlying systemic problem causing all your symptoms. Start by writing everything down about your health history that you think could be relevant. Check out the Not Diagnosed Forum here - at the top of the Forum are a number of Sticky Posts with the ARC criteria for Lupus. Look at these (including the alternative criteria list). See if anything rings any bells. Also start keeping a daily diary from here on in. This will help in any upcoming referral you might have.

Yes of course you could be barking up the wrong tree but whatever the underlying cause for your health concerns are, you deserve to do your best to find out and get some appropriate treatment to help you. Its long overdue.

Please let us know if we can help any further and it would be nice to hear how you are getting on
Joan:rose:

 

[nightbird]

new, but did read and I have more symptoms

Hi all, I am new and not yet diagnosed. I have a photo of me in my teens with the rash on my face. Also in the symptoms I discovered that I have Raynaulds, have had 4 miscarriages because of Pre-Eclampsia of course I have had and do have protein in my urine, suddenly have high blood pressure,
the rash on my arms and legs seems to be where there were hair follicles a while back, but they are itchy and hair never grows there. I think that about 25 years ago I was tested with the ANA, but that was it. The palms and fleshy parts of my hands and my fingers at the top are always bright red unless they get chilled, then they look sort of dead and are painful. No fingernails will grow, they just chip off and have streaks on them. I wear sunglasses inside of my house and keeep the plantation shutters open just enough to give some natural light in the house when I am alone. My kids say I look like a bumble bee with my huge sunglasses. I am very new to the practice of the Dr who has taken me on and I hope she will accept me as more than a left over pain patient. I was treated for the Fibro, but many of the meds I cannot take. Neurontin/Lyrica were very scary for me, I thought I had a stoke because I couldn't speak clearly. My spouse was out of the country and it really frightened him to hear me. I can't take NSAIDS because of damage to my tummy. I have been on every antidepressant around and only gain weight from any type of them. I suddenly one day couldn't take
pennicillin, Head to Toe Hives on that and have never been able to take Sulfa meds. So, pretty much for the fibro I got some Vicodin and Klonopin, Ambien.
Now, because of the swelling in my feet,legs and hands I take Lasix as well.
The sametime I suddenly got HBP I also got high cholesterol. IBS is under control probably because of the Vicodin, but it was so bad for years that I was quite literally a prisoner in my home. It seems to me that once I was given the diagnosis of FMS that nobody wanted to look further and many Drs just told me to get over myself and that they were not interested in treating me. I used to fly to L.A. from TX to see a Rheumy at USC. At some point during our time, menopause came along and anything new was attributed to that. I would be happy just to have the FMS, but a lot does not seem to fit or work on me as it does with most people I have been in contact with over the years as far as meds go. So, I just wanted to get some opinion about my symptoms, and I don't want to scare the new Dr away. Just to get her, I have to drive so far, it's 3 hours just to do the round trip in the car and that doesn't include time with her. I'ts very rural where I am stuck living for the moment. I am in pain, can barely get out of bed in the am due to the stiffness. This pain is not from the botched surgery, I have been like this for more than half of my long life. I just see that I am not making progress, getting worse in areas.
I appreciate the quick response from you, I don't know how to get back and thank you by name, but thanks. If I am way off base here please let me know and I promise not to be a nuisance to your boards.
Thanks, Theresa

 

[LolaLola]

Hello Theresa,
In my experience lots of Docs will diagnose Fibro as a convenient diagnosis to excuse them from looking further. Also they will throw in psychological red herrings quite often. Many people have other conditions going on a s well as their Fibro.
Just a thought, you say you are hypermobile, have you ever been investigated for Ehlers Danlos syndrome, if you have not heard of this I suggest you google it and see if it could possibly be you.

Certainly your symptoms deserve further investigation. Good Luck and you are very welcome here.
x Lola

 

[KarolH]

Hi and welcome to the board,

I agree with LoLo that Firbro is a diagnosis given by doctors who do not want to dive too deep into what the real problem is.

I was dx with Fibro many years ago, then Chronic Fatigue Syndrome, blah, blah, blah..................now I have the correct diagnosis and it took years.

I think it is a matter of finding a doctor who will work with you and not against you. Best luck moving ahead and your symptoms definitely warrant looking into.