So I am going to see a dermatologist today

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damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 7/8/2010 5:10 AM (GMT -7)   
How is everyone today? I hope good. So, my blood work is still all messed up. My SED rate is going up (even being on prendisone) it was 42 last Thursday, I started the steroids Friday and had my blood drawn Tuesday and it went up to 47. My white blood cell count is still high, it has been for the last two blood draws, but I have no fever. I don't have a cold or anything obvious going on. My RA factor was only 9, up from March though but still considered normal. My ANA was negative, but my thyroid is showing all out of whack. It's showing it's overfunctioning alot, but I am gaining weight like crazy.
 
Still lumpy, bumpy and in horrible pain! I am getting these nodules everywhere. My hands, feet, ankles and wrists are swollen and the rashes on my body are getting worse. I tried the fentynal patch, she gave me the 25mcg to use with my oxycontin to see if I got any relief. It helped with the pain from these nodules or lipomas (whatever they are) it helped my back and hips, but gave me a horrible headache! I had to take it off. I can't get in to see the rheumy until August so she got me in with a dermatologist today. Her thoughts being that he may know what is causing the lumps and rash and can tell us where or what we do next. She is concerned about my blood work. Her words were "Something bad is brewing in there, and we need to find out what it is".
 
So, needless to say I am kind of scared and tired of hurting. She didn't really look into Dercum's Disease, even though I told her I had so many symptoms of it. She is a great doc but doesn't seem to want to research this, just pass me off. Hopefully someone can figure out what the heck is going on. Maybe I will get some answers today, I sure hope so!
 
Thanks for listening to my sob story...I hope you all are having a great week with low pain.
Any thoughts or suggestions would be much appreciated! Take care everyone.
Gentle Hugs,
Shannon
 
Fibromyalgia, Chronic daily headaches, Migraine disorder (with and without aura), GERD, High blood pressure, Depression and Anxiety
Oxycontin, Flexeril as needed, Lopressor, Lexapro, Omeprazole, Clonazepam as needed, Promethazine as needed for nausea from migraines


butterflyrose
Regular Member


Date Joined Apr 2010
Total Posts : 34
   Posted 7/8/2010 6:04 AM (GMT -7)   
Good morning!!! I hope you do good at Dr. today. Today I see 2 dr,s one to find out if I have to have another surgery on my belly button. The other my urologist to see when he can set up surgery. I am not having that one until I gat the belly straighten out. I had surgery in may but 2 weeks later it bluged again and the surgon did not know why or what so I had to have a cat done and today I find out what is going on. I am kinds scared of surgery right now. The day after my last one I broke out in bad rash, at first we though it was from the surgery, but to find out I had tried a new softner and that was the reason.

I hope it all works out for you.
butterflyrose
C-5& C-6 disk herniated on to spinal cord, nerve damage both feet, L-4, L-5, S-1, C-4, C-5, Fibromyalgia, Ostero arthritis in both hands,bursitis in both hips,bone spurs in back and wrist, carpal tunnel both wrist,neurofibromatosis, tumors, bi-polar and more
 
norco 7.5, baclofen, for pain, can't take anti-flamitorys, and a ton more.
 
way to many surgery to list!!!


MIKEL99
Veteran Member


Date Joined Feb 2010
Total Posts : 914
   Posted 7/8/2010 6:26 AM (GMT -7)   
Hey Shannon , sorry your having a rough time , good luck with your appt today .I'll be thinking of you , may good things happen ! Mikel

damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 7/8/2010 6:42 AM (GMT -7)   
Thanks Butterfly and Mikel. I appreciate your responses. Butterfly let us know what the doctor says about surgery, ok? Mikel, how are you feeling today? Has your anxiety calmed down some? I sure hope so. Once again I am so touched that no matter how bad you feel you make sure to send me a kind word. You are an awesome friend Mikel, thank you so much! I will post when I get back from the dermatologist today, with any luck I may have some answers! Talk to you all soon.
Gentle Hugs,
Shannon
 
Fibromyalgia, Chronic daily headaches, Migraine disorder (with and without aura), GERD, High blood pressure, Depression and Anxiety
Oxycontin, Flexeril as needed, Lopressor, Lexapro, Omeprazole, Clonazepam as needed, Promethazine as needed for nausea from migraines


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 7/8/2010 8:06 AM (GMT -7)   
 
 
   Dear Shannon,
 
     Good morning *hugg* It is always so good to hear from you. I must admitt though that I had hoped you would have gotten more answers by now. Though I see the reasoning behind sending you to a dermatologist.... It seems more like a shot in the dark. I sure do wish she could have gotten you in with the rheumatologist sooner! By the way, I had a thought while I was reading you post, and I think ti might be good that your doctor look at all "possible suspects", so to speak. Think of it this way, if by the end of their investigation they do not have an answer then they can look in to dercums. Or look into dercums while investigating everthing else. You know "2 bird with one stone".
 
     I am pretty sure that there is something that can be perscribed for the headache you get from the patch. I have many friends on the patch and it seems many of them had headaches for the first week or so. So, you might want to call your doctor and leave a quick message to let her know. There might be some suggestions she can make to help.
 
    I really hope your appointment with the dermatologist goes well today. Please let us know how your visit went when you can. And of course you are in our prayers
 
*warm hugg*
     dani
 
TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood
 
Chronic Pain Moderator


MsBunky
Veteran Member


Date Joined Jan 2010
Total Posts : 1097
   Posted 7/8/2010 8:08 AM (GMT -7)   
Shannon, good luck with the dermatologist today...make sure you tell him/her about your research into Dercum's Disease. I hope they are able to come up with some answers and find something that will offer you some relief.

hugs,
Pam
Conditions: Fibromyalgia, Severe Myofascial Pain, Chronic Pelvic Pain (with permanent muscle damage), Femoroacetabular Impingement (CAM and Pincer), Reynauds, IBS, Surgical Adhesions, Ophthalmic Migraines, Severe Hot Flashes (both Surgical Menopause and medication related), plus physically unable to vomit due to the Nissen, and I have extremely tiny veins with a lot of scar tissue...a joy when it comes to having to give blood or get an IV started

Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT

Medications: Oxycontin, Cesamet, Tramacet, Cymbalta, Flexeril and Clonidine plus Laxaday, Vitamin D and a Multi-Vitamin daily


damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 7/9/2010 8:42 AM (GMT -7)   
So the dermatologist appt wasn't all I expected. He told me the lumps are lipomas the hard ones on my fingers are nodules and the rash is vasculitis. Why am I getting all these things? He has no idea! I need to see a rheumatologist and an internist. He said the same thing my regular doctor did, something bad is brewing and we need to figure out what it is! Well duh! The lumps are growing like crazy and popping up everywhere, I even have them inside my cheeks and my gums are all swollen and white today! My mouth along with everything else huts so bad. He gave me a high dose of steroids (prendisone again, but starting out with 5 for 3 days, then 4 for 3 days etc.) even though I told him the last steroids didn't help. He has heard of Dercum's and said he didn't want to say that I had it yet because it is such a horrible diagnosis...WHAT?? Worse then not knowing what is going on?

My mind feels shot. I am so confused and doing even more stupid things lately. I feel so wierd, like I am not myself. It seems worse then just the fibro fog I always have. I don't even want to drive cuz I am scared of what could happen. I am starting to feel like I am getting them on my brain, is that crazy of what? I just wish someone could tell me what is happening, I know I need to have patience and that they are working on it. I guess I am just starting to get really scared and hate the increase of pain. Maybe the steroids will help the inflamation this time (at least in my gums hopefully so that I can eat). I'm sorry for the long rant and being such a baby! I hope everyone is doing well and has a wonderful weekend. Take care.
Gentle Hugs,
Shannon
 
Fibromyalgia, Chronic daily headaches, Migraine disorder (with and without aura), GERD, High blood pressure, Depression and Anxiety
Oxycontin, Flexeril as needed, Lopressor, Lexapro, Omeprazole, Clonazepam as needed, Promethazine as needed for nausea from migraines


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 7/9/2010 8:54 AM (GMT -7)   
 
 
   Dear Shannon,
 
     Gosh, you know I was afraid that would happen. It had seemed odd to me at the time that you would be sent to a dermatologist. I am so sorry you still have to wait to see a rheumatologist. Hopefully though an internist doesnt have quite so long a waiting list. It would be nice if someone could grasp the urgerncy of the situation!
    You know I had a thought. I know the steroids arnt working to make the problems go away... but they might very well be helping to slow it down? I hope so anyway. I really hope you can atleast have your ability to eat and lay down.
 
    You NOT whinning. NOT AT ALL. You hear me?!?! Not one bit. Dont go thinking that atall. You are under a tremdous amount of stress. You are in a position medically where they don't even know what is going on, let alone how to treat it. Your reactions are perfectly normal and understandable.
 
     Did the dermatologist say he was going to get you in with an internist? I hope so, the quicker you can get some real help the better.
 
     I really hope you are able to relax some what. Try to keep you mind off things. Read a book or work on a hobbie if it is possible atall. Most of all try to not be so hard on yourself. You are doing a great job, and I challenge anyone to handle it better than you! Please know you are in our prayers here. Stay strong!
 
*hugg*
  dani 
 
TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood
 
Chronic Pain Moderator


MIKEL99
Veteran Member


Date Joined Feb 2010
Total Posts : 914
   Posted 7/9/2010 9:47 AM (GMT -7)   
Hey Shannon , thats frustrating , I know how you feel , no one knew what was wrong with my leg for 6 months before I got a diagnosis and the right meds , its very frustrating indeed . Hang in there my friend , I really hope you get an appt soon , push for it , call them and bug them and tell them how much you need to see these people .Good luck to you my good friend , Mikel

damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 7/9/2010 4:13 PM (GMT -7)   
Thanks Dani and Mikel...I sure love you guys! So, the dermatologist called my docter and she called me to let me know what he said. He told her the lumps are from Erythema Nodosum, the rash he still called vasculitis and says to go to a rheumatologist as soon as I can get in to see if it is a connective tissue disease or an inflamatory (SP?) autoimmune disease causing it all. I don't know if that makes anymore sense, it really didn't to me...lol Good news is that I can get into the Arthritis Center of Nebraska on the 21st of this month! Yay! My sister (Antbuggey) and I are both going that day to see the rheumatologist. It's like a 3 or 4 hour drive (UGH!) but it will be worth it to find out what is going on. Maybe in the meantime the steroids will help. Thanks for listening to me whine over this and for more importantly responding to me! I hope everyone has a great weekend with low pain...Take care all.
Gentle Hugs,
Shannon
 
Fibromyalgia, Chronic daily headaches, Migraine disorder (with and without aura), GERD, High blood pressure, Depression and Anxiety
Oxycontin, Flexeril as needed, Lopressor, Lexapro, Omeprazole, Clonazepam as needed, Promethazine as needed for nausea from migraines


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 7/9/2010 4:55 PM (GMT -7)   
OH Shannon, it is so great to hear some good news for you. And to have gotten an early appt. I sure hope that gives you some answers. I wish you so much luck at that appt.
That was very good of that dr. to call you at home!!

Hope you have a nice weekend!!
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since 2000.
 
           


damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 7/10/2010 5:07 AM (GMT -7)   
Thanks Suzane. How are you feeling today? I hope today is better for you then they have been. I forgot to ask what your doctor's next plan of attack is? Or is it time to find a new doc? Please keep us posted, you are in my thoughts everyday!
Gentle Hugs,
Shannon
 
Fibromyalgia, Chronic daily headaches, Migraine disorder (with and without aura), GERD, High blood pressure, Depression and Anxiety
Oxycontin, Flexeril as needed, Lopressor, Lexapro, Omeprazole, Clonazepam as needed, Promethazine as needed for nausea from migraines


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 7/10/2010 8:38 AM (GMT -7)   
Hi Shannon and good morning
I did get some sleep by taking some meds (2 flexeril and 2 Ativan). I don't like doing that but it's the only way I can get some sleep.
There are  no more plans of attack for me, we have done it all. I need to get all the narcotics out of my system, which I am almost done my Oxycodone and then it's time for my body to try to get back to a normal state. The DM syrup I take is to reset the receptors. I have been sick so long that my body systems are all out of whack and firing up too much and not in the right way. The nerve pathways are screwed if you know what I mean. I am trying craniosacral again as suggested by the iridologist. He too is trying to get my systems back in alignment. Also two falls i had onto my coccyx when younger relate to c1c2 vertebra, so time will tell and I'll believe when i see it.
I had my head packed in ice all night and continue the same this morning. I am praying that i can just cope better with the pain today. It's all in how I cope with it because the pain is always horrible.
 
hope you are having a good day and that all my friends here are happy today and can put a smile on their faces
 
Your continued support will get me thru this!!
 
 
love
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since 2000.
 
           

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