PDA

View Full Version : Not sure what is going on... please advise



Lizza
05-03-2009, 12:04 PM
I found this site a few months ago after I had a positive ANA of 1:320. My SEG & LYM were off too, one high the other low. Originally the Dr. was checking for Raynaud's which my tests came back negative for. After I had my blood work done we moved states. I am a recovering heroin addict and have had an awful time finding a good Dr. The Rheumy I went to here in OH ordered new blood work because for whatever reason he couldn't understand my tests. He is very rude to me and treats me like some loser who is making things up b/c I am a recovering addict. I only told him that so he wouldn't try to give me opiates (BIG MISTAKE). So anyways, after over 6 months of holding on to my blood work orders I went and had the test redone. My ANA came back at 1:40 which he is calling normal. The things I have read say it is normal for the ANA to change with flare ups - am I wrong there? I have awful arthritis in my hands, back, feet, etc. I get a rash whenever I am in the sun (not the butterfly rash on my face though). This rash is only ever on my arms, chest and stomach. I have very poor circulation in my hands and feet and even with using diabetic creams they still crack open and bleed. Lately I have been getting like charlie horses in my hands (at the bottom of my thumb) and my arms from the shoulder down go numb for no reason. The dumb Rheumy here in OH is saying he can't do anything for me and it is just fibromyalga (sp). Again from what I have read with fibromyalga there is no swelling of the affected areas. My hands and feet swell terribly and get red blotches. I am just getting so tired of it all. I need to find a new Dr. that will do something. I am frustrated and tired of being told that my pain is not real. I just want to know what is going on with me. I am 24 and feel like I am 90. It takes me a couple hours in the morning to be able to even make my coffee. I stay at home with my two year old son and he show's no mercy! lol But seriously neither does my husband. I just don't know if I can deal with this anymore. I am so tired of feeling crappy, I have been so down lately. Wouldn't a good Dr. find out what is going on? When I find a new Rheumy I will not tell them I am on Suboxone, it is pretty sad that I am trying to better my life and keep getting abused for it. I just needed to vent a bit. My veins are starting to bulge from typing too long (another cramp). Thanks to anyone who reads this. Best wishes to you all!

Angel Oliver
05-03-2009, 12:23 PM
Oh well done to you on giving up the heroine first of all.Such a massive and difficult thing to do.So proud of you!
You hang in there.Maybe some of our members may live near you...maybe give you names of their Doctors...so hold on. We all have experienced 'bad n arrogant god complex doctors' so dont feel its just you because you were taking that drug ...its not! Some Doctors are utter tosers!!! I am sure between all of us here,we may be able to help you with,Doctors names....or helpful posts to any questions you may have.We are all here for you.And you are a mother too! WOW!! You should be so proud of yourself.
Never let the doctors EVER make you feel bad EVER! Remind them if you get that attitude....what you have achieved and you are a mother too.
DONT GIVE UP!!! You WILL find a Doctor who WILL and CAN help you on this.Just unfortunate that you have got a bad one with attitude.I have one too! In the middle of sorting it out.
Watch as many people come here...to help and support such a wonderful lady.
Sending you gentle hugs my friend.
love
Angel.xxxxxxxxxxxxxxxxxxxxxxxx

AyahsClan
05-03-2009, 12:27 PM
Hi Lizza and Welcome,

First of all let me congratulate you on your successful battle over addiction. That is an incredible achievement dear one, you should be proud of yourself. It must feel so awful dealing with such dire undiagnosed health problems after coming this far. But, don't despair, it doesn't mean you will always be dealing with these terrible symptoms. You just need to find that right doctor. How far is the nearest Medical University to you?

I know how you feel, how they treat you. I have a genetic blood disease that was going undiagnosed and destroying my liver. Every doctor I went to said my liver was swollen, I had cirosis, and they all assumed I was an alcoholic. So they did nothing. I nearly died by the time a doctor did a liver biopsy, diagnosed and started the treatment for my condition.

Hang in there. I was raising 3 children during all this and many surgeries too, one hyperactive toddler. There were days I thought I would lose my mind! Day by day, one day at a time, you're going to make it. You have a new support system here. Right now your health problems are like a box of puzzle pieces the right doctor will put together with you.

mountaindreamer
05-03-2009, 01:01 PM
hi lizza,

i am glad you came back, i have been wondering about you and hoping that life was being good to you.

i too have fibromyalgia, and my hands and feet are very affected. I get swelling around the veins in my hands, my feet hurt, and both swell and get red splotches when in a flare.

have you tried tramadol....this helps many with the fms pain. Also, Lyrica has really helped some sufferers. I tried it, had a negative reaction,and had to come off. Stand strong to your dr.....if he feels that you have fibromyalgia, then he should be able to diagnose a med that does not impede with your addiction recovery efforts. If he has a physician's assistant, or nurse practitioner, you might want to see them, explain your situation and concerns and see if their attitude equals the drs. If so, you will probably need to search for a new dr.....it is imperative that we have confidence in our drs.,,, they are a key team member.

good luck, hope you keep coming around.

BadFlareDay
05-03-2009, 02:21 PM
My Rhuemy is in Georgetown Ohio, if you live near there I can give you his name. He does not rush the appt, sometimes you are in with him for 2 hrs each visit. I also wanted to say congrats on being a recovering addict, my Son was also addicted to heroin and I pray he don't get back on it.

MicRoMediC
05-03-2009, 03:04 PM
Congrats on being a recovering addict. I know you're going through a tough time and I know you're strong enough not to revert back to drugs.
Also, this doesn't sound like Lupus, though I'm not a doctor. It does have some of the symptoms of an autoimmune disease though. And normal people can walk around with a positive ANA and not have a disease; people can also walk around with a negative ANA with a disease. I hope you find a good rheumy soon. Good luck.

Lizza
05-03-2009, 05:55 PM
Thank you all so much for the support! It felt really good logging on and having these kind words! I live in Mansfield OH so I am about an hour from both Cleveland and Columbus. My addiction Dr. gave me the name of someone at the Columbus University hospital I just need to get a referral from my PCP (who is a d*ck too). Some days I just don't feel like dealing with any of it. I know that doesn't ever help but I can't help it. I am currently on Ultram through my addiction Dr. I am also on Ambien for sleep, as I don't sleep very well, I get sharp pains in my hands and my shoulders go numb. Also I have had arthritis symptoms since around age 12 (also when I had a lymph node removed behind my left ear) and my Rheumy said it isn't possible that those things are related to what is going on now. I also have been tested for mono 5 times since age 12 because I get these terrible bouts of fatigue and can't stay awake (BTW, I never had mono). This is still happening and it sucks! Again I want to thank you all for your kind words!!

AyahsClan
05-03-2009, 06:09 PM
Thank you all so much for the support! It felt really good logging on and having these kind words! I live in Mansfield OH so I am about an hour from both Cleveland and Columbus. My addiction Dr. gave me the name of someone at the Columbus University hospital I just need to get a referral from my PCP (who is a d*ck too). Some days I just don't feel like dealing with any of it. I know that doesn't ever help but I can't help it. I am currently on Ultram through my addiction Dr. I am also on Ambien for sleep, as I don't sleep very well, I get sharp pains in my hands and my shoulders go numb. Also I have had arthritis symptoms since around age 12 (also when I had a lymph node removed behind my left ear) and my Rheumy said it isn't possible that those things are related to what is going on now. I also have been tested for mono 5 times since age 12 because I get these terrible bouts of fatigue and can't stay awake (BTW, I never had mono). This is still happening and it sucks! Again I want to thank you all for your kind words!!

LOL @ "my PCP (who is a d*ck too)."

Yup, betcha we all had at least one. Go in there to Doctor d* and tell him you NEED that referral.

I know how you feel about dealing with it all. I try to put it all out of my mind on the days I don't have to make those calls, appointments, go to them, etc.