what do i do now

[oohloo]

style_emoticons/<#EMO_DIR#>/hissy1.gif Im so frustrated, went to see rumie yesterday, and as i thought, the blood tests came back normal.
I went feeling negative because whenever i go see these so called doctors i get the same each time. Why does this happen, he told me that ive got fibro and raynauds and basically heres a perscription and get on with it. I dont think thats the case when you read the list of symptoms ive got,( and what i gave him and he couldnt be bothered to read it)it just seems so wrong. Why should i have to just get on with it, i am 35 years of age and my body feels twice that, surely that isnt normal. When my hubbie asked if there was anything that can cure it he said no, just get as much exercise as possible and learn to live with it.
Im going to see my gp today and hopefully he can come up with something else, or give me some advice. Also my skin has started to get the rash again, ive got an sos appointment with the dermie so im going to ask doc if he thinks its worth calling to get an appointment next week, maybe a biopsy on my skin will get an answer.
Im so fed up with being in pain all the time, and fed up with getting fobbed off all the time, it makes me feel like im going mad or that i am a hypocondriac.
If anyone can give me advice or has had the same thing happen please let me know.
Here is a list of my symptoms, be warned its quite long so i hope you dont get bored of reading.

Extreme fatigue
Morning stiffness
Swelling to fingers and toes
Severe joint pain and throbbing
Muscle weakness
Pins and needles and numbness to hands and arms
Difficulty swallowing, sore throat and horrible taste
Arms and legs heavy and weak (difficulty walking, especially stairs)
Trembly hands
Hot burning feeling to lower legs
Twitches to arms and legs
Muscle spasm in chest area all the time
Palpatations
Itchy burny skin and rash
Neck and back hurts
Bruising easily, not healing properly
Headaches
Night sweats
Feeling cold very easily
Red nose and cheeks
Spasm in face
Nose sores
Occasional body seizures
Brain fog, difficulty concentrating
Mood swings
Depression

Well i think ive covered most of it, see what i mean when i say it makes me look like a hypocondriac !!
Thanx for listening, hope i get some help and advice
Lots of Love
Lou.xxx style_emoticons/<#EMO_DIR#>/tantrum.gif

[lisade]

Hi, I am sorry you are having such a tough time getting properly diagnosed. I know it takes a long time for some of us to get a diagnosis. For me it took about 4 years or so. What really got my ball rolling was my dermie did a skin biopsy on the rash and it came back lupus. He then ordered proper blood work and he diagnosed me. I then was sent to a rheumy who said I didn't have lupus, my dermie was very upset and sent me to another one who did agree with him. Since then I have seen two other rheumy's and been to Mayo clinic they all agree I have lupus.

Keep plugging along until you find a good one. I know it's frustrating and feels like a battle.

You are not a hypochondriac, we alll fear that label at one time or another. I certainly did.

Good luck..

[helloos]

Hi Lou.

I understand your frustration. Have you checked the symptom list of fibro?
There are a lot of similar symptoms of LUpus on there too. Is he treating your fibro with some pain medications? If you do have a rash, then yes, I would definitely go to the dermotologist when it is there. I would still continue to keep a list of your symptoms, and taking pics of any swelling, redness, rashes and keeping them. If you are unsatisfied with your doc, I would go and get a second opinion. I got a second opinion and stuck with that doc. I too am 35, and no you should not be told, go on and live with it. Although that is what we do, we need some help to do it. If this doc is not going to continue to follow your symptoms, then maybe you can see someone else.

Hang in there and don't give in. As said, it can take years and years to be diagnosed.

[softball893]

Hi lou,


I am so sorry that you are having such problems trying to get diagnosed! I would try and get a second opinion from another rheumy! Remeber that we are here for you, and that we are wishing the best for you too! I agree with Teri, is your doctor treating your symptoms properly, and let me know what your gp says!



Love, xxxxx


Liz

[raggedyann1]

Hi lou,

First off I want to say that it is still possible that you could have lupus but many of your symptoms including your rashes are also symptoms of Fibromyalgia. Fibromyalgia is a real dx and the pain with fibromyalgia is considered to be more intense and disabling than the pain that generally accompanies lupus. Here is the link to the National Fibromyalgia Association this takes you to their symptoms page.
http://www.fmaware.org/fminfo/brochure.htm#symptoms

You didn't mention which medication that the rheumy prescribed for you. Often the first med is amitriptyline or cymbalta the newer version. Second is often Neurontin/gabapentin or Lyrica the newer version. As someone who has lupus and fibro (plus a couple others) I can tell you that when I came out of remission it was harder to see the lupus through the fibro. Once my fibro was under control it was possible to determine what the lupus was actually doing. I can also tell you what a relief it can be to get fibro under control.

While you are working with your GP I would start the medication as it can take a couple weeks to start to see results. It also takes a few days for your body to adjust and not feel spaced out. Anytime I had to increase the dose of either of my meds I wouldn't drive for at least 2 days and then checked myself out on the 3rd day to decide how I was doing.

Take care,
Karen

[oohloo]

style_emoticons/<#EMO_DIR#>/Thanx.gif style_emoticons/<#EMO_DIR#>/Thanx.gif to all of you that had the time to reply. I went to see GP yesterday, he was fab, he doesnt agree that i havent got lupus, if anything he thinks its certain. He looked at my rash and has told me to get the appointment with dermie, i have done that today and will see him on tuesday for a biopsy.
He has given me another perscription for ammitryptiline and told me not to even consider taking the medication that the rumie gave me. He feels i have yet again been let down, but has told me he is going to carry on testing my bloods, after my holiday in july. I also took a urine sample with me which he looked at and said it didnt look very healthy and tested it, again protein and alot of other things in it (cant remember what they were called) and has sent it off for testing, he thinks i might have a prob with my kidneys.
Well got alot more out of seeing him, stupid rumie, he just couldnt be bothered to carry on.
Im feel so much better for seeing him.
Thanx again my good friends.
Hope to chat again soon
Lots of Love
Lou.xxx style_emoticons/<#EMO_DIR#>/highfive.gif