View Full Version : hello everyone, new here and very nervous
01-21-2009, 07:20 PM
i am a 35 yr old female. i was referred to a rheumatalogist 3 wks ago bcuz my doc suspects that i have arthritis,, the rhemo told me he suspects lupus. i had all the blood work done and everthing came back negative. I have had extreme joint and muscle pain. Mornings sometimes are horrible i awake with my hands swollen and my fingers are in such extreme pain. I feel as if my legs are being sawed off :( I have terrible fatigue and extreme weakness, sometimes i literally feel as if i am slowly dying. Nausea is extreme migraines are horrible. I cry and cry bcuz i feel so useless and feel unable to do anything even something as simple as walking my dogs. My question is should i continue to see the rheumatologist if my blood work came back negative but i have all the symptoms? I dont know if iam wasting my time. Sometimes i wonder if its in my head. Every advice and opinion will be gladly appreciated :)
01-21-2009, 07:46 PM
I'm sorry you're going through this, especially since you haven't been able to get a diagnosis. Has anyone mentioned fibromyalga to you? That's a possibility. Also, there are some people who do have autoimmune diseases but have negative blood work. Sometimes, if the symptoms are obvious enough, a doctor will treat the patient with negative blood work just as if the blood work was positive. Don't be discouraged. It takes time to get a diagnosis. Ask the rheumy what your next step should be. If all else fails, get a second opinion. Good luck and best wishes.
01-21-2009, 08:12 PM
thanx for ur response jesse, i didn't know u could have a negative bloodwork and still be treated. I have heard fybromyalgia before but never was suspected to have that. hmmm,, I also wanted to mention about the butterfly rash i get in my face, the sores in my mouth and I also suffer from nephrocalcinosis. I have been curios as to if there is any connection to that. I suffer from really bad high blood pressure also. The list goes on and on. The rhemutalogist started me on methylprednisone, 6 the first day and wean me off as the days go by.
01-22-2009, 02:15 AM
sorry about your struggle, but this appears to be the norm with this disease. I struggled for over 10 years before getting a diagnosis. I was first diagnosed with fibromyalgia and just recently added lupus to the diagnosis. I have tested positive for lupus for these many years, but did not have enough symptoms to support the blood work. so, you see, this process is usually a difficult one that involves YOU having to be persistent and strong, and don't let anyone make you believe this is in your head.
many years ago, when i was searching for a reason for my "decline in health, and belief that i must be dying," i encountered some rheumies that "did not recognize fibromyalgia(fms)" Be sure to ask the nurse if your rheumy recognizes this disease.
By the meds that the dr. prescribed, it sounds like they believe you may have lupus, but can't diagnose it yet because the blood work does not support the diagnosis.
Also, my dr. gave me a Medrol injection. This was used to give me relief, but also in the diagnosis process. She says lupus will respond to the drug, whereas other diseases will not.
Good luck, keep your belief in yourself, and call on us anytime you need extra support.
share a smile today,
01-22-2009, 04:00 AM
Hello and welcome and so glad you found us. Please dont be nervous you will find everyone here very understanding and very knowledgeable......oh except be nervous if i begin to sing ......lol.....that will make you nervous lol :)
All's i can say is ''DONT GIVE UP TRYING TO FIND A DIAGNOSIS''. I am in the same situation as you in a way. My bloods came back negative, i have many Lupus symptoms and have been told it could be M.E. I was going to leave it, but with chatting to people here, they have given me the strength to write to my Rheumi and i await his reply.
Keep posting here....many people have more input than me, so you may find the answer you were looking for.
01-22-2009, 05:07 AM
Thank you soooo much everyone for being so supportive :) i am learning quite a few things here. Is a MEDROL injection the same as a CORTISONE shot? I know that two weeks ago my rhematologist gave it to me for a severe pain I had in my shoulder that lasted almost two months :( Its soo amazing how everyones case has a little of my own, we can all relate to how we are feeling. Yes the rhemeutalogist asked if i was on prozac and if i took it everyday. I felt as is he was probably thinking it WAS ALL IN MY HEAD, but at the same time he's putting me on these treatments so I will give him a chance. Thank you everyone once again and I will definitely stay and fight this :D
01-22-2009, 07:10 AM
Its not all in your head its very real. I feel the same.Im sorry i carnt answer your question, but im sure someone will be here soon to help you out. Hope you are ok ....have a fab day :)
01-22-2009, 03:34 PM
And welcome to the site. I am not familier with Medrol, but I'm sure some one who is will be along to answer your question.
First let me say that even with out a diagnosis your rheumy and family doctor will come up with a drug treatment plan that can help ease your symptoms.
There are many things you can do to help yourself as well. Things WILL get more managable.
I am not diagnosed either. I thought it would be an easy process as my mother had lupus and my sister is also diagnosed with lupus.
My blood work has come back with mixed results and I am still not diagnosed.
I have joint pain in my feet, knees, ribs, right hand and jaw.
I'm on Arthrotec 75 and plaquenil. The arthrotec went to work with in a week of starting it, the plaquenil took six months to kick in.
When this all started I was swollen and exhausted, and in extream pain. I could hardly walk. I spent alot of time crying and thinking things would only get worse and not better.
It did get much much better.
Here are some suggestions for you.
-Stay out of direct sunlight when ever possible. If not possible wear a wide brimmed hat and cover up, use a high blockage sun screen.
-Ice your sore joints for no more than ten minutes a time. You can alternate with heat if you find that helps. (this helps fool your joints into thinking they do not hurt so much and stop your body from flooding the joint with fluid to protect it.
-I bought diabetic compression socks from the drug store, I think you can get gloves as well for your hands. I started out putting them on before I got out of bed in the morning and wearing them all day at work and removed them when I got home at night. Now I just wear them when I first get up in the morning for about an hour. They did help to control the swelling. They cost about $25 for one pair.
- I bout a tensor wrap around knee brace. Again I started wearing them for the entire day. Now I just where them when my knees act up now and then. They support the joint, cutting the pain quite a bit and make it easier to walk. I bought them at the drug store and the cost about $15 each.
-(this one can wound the pride...but...) I bought a cane. I used it to hobble around the house. You carry it on the same side that is the most sore and use it in step with your sore leg. I know your hands are affected so this may not work well for you.
-Do gentle non weight baring exersizes. Swimming, stationary bike on the lightest setting, gentle walks. You have to move the joints. It's a fine line between moving too much and not moving enough. The result is the same. Stiff joints and alot of pain.
-I bought polar fleece bed sheets. Going to bed in the winter was agony! :shock: My joints would hit the cold cotton or even flannel sheets and the pain would throb in my joints and keep me awake all night. The polar fleece sheets are lovely and warm straight away. No pain...yah. Queen size polar fleece sheets where $40 at the local super store. It's a big grocery store here that sells just about everything.
- Satin pajamas....trying to turn over at night is torture with sore joints. Satin (or slippery) jammies help to make turning over easier.
I hope some of this is helpful to you. Most importantly I want you to know that things can get alot better. You are on your way to getting sorted out no matter what the cause of your pain is.
It takes alot of trial to find the right medications that are going to work for you. When your doctor gives you a new medication be sure to ask how long it should take for you to know if the drug is working for you.
Some times it's a week, sometimes a month or a couple of months. Do not get discouraged if the first medications either do nothing or seem to make you worse.
Do not hesitate to go back to the doctor if your swelling or pain increases with a medication. It simple means that medication may not be right for you.
Have you been refered to a physical therapist? If not, ask your doctor if that's possible. If you are on a good medical plan they should cover most of it, if not all of it. The therapist can give some suggestions for strengthening the muscles around your joints. That will help reduce the pain and the swelling.
Good luck and keep us posted. Ask any questions you like, this is a very warm and friendly group of people. Whining is welcome :lol: we all have times when it gets us emotionally.
01-22-2009, 07:07 PM
yes, medrol is a cortisteroid. My dr. gave to me about 6 weeks ago, and i still have mostly good days. She said this med is used to relieve pain, but also assists in the lupus diagnosis. Evidently, other diseases do not respond to the med, so if you got relief, then this reinforces a lupus diagnosis.
good luck, welcome to the site, i am sure that many will be able to offer you comfort and guidance.
01-22-2009, 07:11 PM
sorry, i realized that i did not accurately answer your question. No medrol is not the same as cortisone. Medrol is a cortisteroid, and is given in the hip for overall relief. Cortisone is given into the painful joint, for localized relief.
sorry for the poor response....having some brain fog this evening.
01-22-2009, 11:48 PM
Welcome! I am so happy you found us and decided to jump in to all of our lives :D As you have witnessed, everyone is amazing here and can help you get through all of this. Someone will be able to relate to exactly what you are always going through which will help you to never feel alone. Keep posting and let us know what you are going through. Remember, it is not in you head and this pain is real and we are here for you :angel: