Hi! I'm really in need of some support right now. I've been dealing with Chronic pain for the past 5 years caused by a herniated lumbar disc. Within the past 6 months I have been diagnosed with 3 more herniated thoracic disc, and now am suffering from joint aches, and extreme fatigue. For the past two months, I've been completely bedridden by the fatigure for a few days, and it's connected to my menstral cycle.
I've been seeing a Rheumy for 4 months now. Right off the bat he ordered the Lupus test, along with all the other required lab work. When I saw him on the following visit, he told me that he couldn't find anything wrong with me, and he would see me in a month. I had to point blank ask him what the blood test said. He casually mentioned that I tested positive for the Lupus protien, but that the titre was to low. I'm not excatly sure what the figures are, but will be asking for it at the next visit, in 2 months. Last time I saw him I told him that at points I am too tired to even eat. He said that I looked alot better then the last time I saw him.......I'm getting really frustrated! I know, I should get another doctor, but I am having such a hard time with doctors right now, between the neurosurgeons, pain management doctors etc...It's such a struggle!
I am so angry that my body is betraying me like this. All I want to do is be able to go to work and look after my kids. I dread the next flare. I pretty much live in fear of it, and keep counting the days on the calendar. I've been through this before. I've been paritially disabled for 5 years. I've learned to live with limiations. So, why am I having such a hard time now???
Probably all of us have asked why are we going through this now. There really is no answer to that question. The best that we can do is to try to take care of ourselves, do all those things necessary in order to avoid a flare and to take precautions (make lifestyle changes) so that we can gain some normalcy back into our lives.
One thing that we all believe is that our stress levels will most certainly exacerbate our symptoms, make our flares come more often and make them increase in intensity. I truly understand your frustration at this change in your life and in your health. But, I do sense a lot of stress in you and I can honeslty say that being so stressed is not helping you at all. In fact, it may be doing your health more harm than good.
Throughout these forums on this site, you will find many discussions about how difficult it is to get a diagnosis of Lupus and the reasons for that difficulty. One of the most frustrating things about trying to get a diagnosis is that, many times, doctors are unwilling to do so until more symptoms develop or the ones that you have worsen. Lupus is different for each of us (as are its symptoms) and even in us, our Lupus changes. So, it is not an easy disease to diagnose and the process can take months to years before a difinitive diagnosis is made.
You have not yet been diagnosed, but your doctor suspects Lupus. Learn as much as you can about the disease, its symptoms, its medications and its treatments. In doing so, the next time that you see your doctor, you will be able to ask informed questions and you will be able to give necessary information that he/she can work with.
In the meantime, try to find some way to reduce your stress. You are not helping yourself at all by maintaining so much stress! Also, start now doing those things that will help you to reduce your chances of a flare-up and/or at least lessen their severity. The whole point of treatment is to avoid a flare. That should be your primary goal right now!
You may come to us to ask any question and we will be here to help you. Please know that you are not alone and we want to provide you with as much information, support and understanding as we can.
I wish you the very best
Peace and Blessings
Welcome to the Forum! I'm really glad that you found us!
Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!
I'm SO sorry to hear that you are going through such a hard time :cry:, but please know that you are in my thoughts and prayers...
Keep well and God bless!
I know the pain of herniated disks. I have had three. Two lumbar one cervical spine. Three surgeries. One wasn't successful. I feel for you and toss Lupus in the mixed, whoaa. A mix we could do without, eh?
You do not have to wait for two months to get your results again. Call the doctor's office, speak with his nurse, not the receptionist and ask for the results. Sometimes she may even have the doctor call you back with the results and ask them to clarify what it actually means. The tests are yours. Ask for a copy to be sent. They will not give you your actual medical record, but you can obtain a copy of it.
Some medical facilities will give up to a certain amount of pages free, but then they will charge you. Inquire about the cost when requesting copies.
I do know from experience a herniated disk can cause secondary joint and muscle pain especially in the limb that is being affected. Sometimes the pain is from the pinched nerve and/or it is from the way we contort our bodies to alleviate the pain which eventually will cause another pain. Also, the chronic pain from the affected muscles causes fatigue along with mental fatigue. Resulting in depression. It's a lot of work trying to control pain mentally.
Lupus pain for me is, joints in the fingers, wrists, elbows, hips, feet and ankles and the surrounding muscles/tendons with weakness.
I concur with Saysusie, knowledge is power. Read to be prepared for your next visit. You don't need a diagnose, if you suspect Lupus, to begin trying methods to control a flare.
My doctor prescribed:
Avoid sugar and sugar subsitutes. Splenda is okay. No sprouts. Limit or avoid sun. Use sunscreen.
This has been my prevention regime. Anti-inflammatory regime...
Low carb foods. No sugar or substitutes.
Diet high in Omega 3's. Fish, salmon, tuna. All dark berries. Green leafy vegetables. Oil, only olive. Pomergrane juice. No pre-fabricated food. Nothing in a color wrapper... basically, box, bag or can. Unless it is canned salmon or tuna or frozen vegetables or fish. Poutry is fine. Fresh, fresh. No red meats. No preservatives or additives. Stay away from wheat and wheat by products...
I supplement with 2000mg fish oils and a super B complex.
10 Minute Solutions DVDs. Daily stretches.
Read up on anti-inflammatory foods.
And there you have....Try some of this till you can see your doctor next. Might help.
Note: I also dose with Plaquenil, a malarial prescription and Ultracet, prescription too...when pain isn't manageable follow by an OTC tablet form of allergy medicine. Helps stop the itches.
Welcome to We Have Lupus. You will find a wealth of information. I have. And a wonderful group of people. Come often.
Enjoy this day.