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Old 05-18-2010, 09:21 AM   #1
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Join Date: Nov 2004
Posts: 128
galpster HB User
Newly Diagnosed - Your Experience, Tips, tricks etc.

Hi All, I wanted to introduce myself and ask those of you who have been dealing with this If you have any tips, tricks or just want to share your experiences with me to give me some insight on how to fight this disease. I would greatly appreciate it. I have went to all the various websites and explored the board but hearing and talking to real people real time who go through it helps so much more. The one symptom I'm especially interested in combatting is the overwhelming fatigue because even on my 'good' days I'm still exhausted so any tricks for this would be great.

To introduce myself here is some history on me (sorry for the length in advance.)

15 years ago I had a herniated disc on my L5-S1that bothered me off and on for about 8 years my back would just go out without warning but I would see a chiro and he would fix me up when I was 27 my back permanently went out and stayed out, I ended up having a microdisectomy/lamenectomy. It worked for 8 months then I went to the batting cages and re-herniated. My life was never the same. I had to have another surgery 2 weeks later. I re-herniated the minute I stood up after surgery. This surgery also came with a ton more scar tissue which had wrapped itself around my sciatic nerve. I was in constant pain every day and had to be on pain management. A year later I ended up with a fusion which failed, a year later I ended up with a second fail to replace loose screws that were sitting on my nerve and put in a cage to make my back more stable. All these surgeries did were traumatize my body and make my back worse and nerve pain worse. I ended up on permanent pain management for the rest of my life.

I started having some problems with severe acid reflux and on a routine blood work exam they found that my inflammation rate (sed) was 58 and referred me to a Rheumatologist. Within five mins of walking into her office I was diagnosed with Fibromyalgia. See there were things I had dealt with a long time that I just thought were normal such as being tired all the time, waking up in the morning being so sore I could hardly stand it, stiffness in my joints etc. I just thought everyone dealt with this I had this since childhood so to me this was normal and I always just worked through it, I have an extremely high tolerance to pain. Along with the fibro she discovered that I also had something else going on she suspected it was possibly Lupus. However my ANA markers were negative for the most part, there was one time they tested borederline positive but then when the tested again they were negative, I had some of the other symptoms but at that time not enough for a conclusive Lupus diagnoses.

Over the next three years I got very frustrated and I actually quit going to my Rheumy and went to another one who diagnosed me with Inflammatory Arthritis so I was on methotrexate and predisone for over a year with really no improvement and meanwhile I was getting more and more symptoms but the second Rhuemy didn't want to do any further testing to discover what was really going on with me. In fact his exact words were it has nothing to do with your arthritis so I donít care. I quit going to him and all doctors except a pain management doctor for over a year. I continued to go downhill rapidly, I had my gallbladder removed, 2 hernia repair surgeries, kidney stones, partial lung collapse and a host of other symptoms such as the butterfly rashes, rashes over my arms and legs for no apparent reason, couldn't go out in the sun for even a minute without getting horrible blisters (I literally look like I glittered in the sun within 30 seconds from the blisters popping up on my skin), swelling, joint pain so bad I could barely move, etc. My health got so bad I did not want to live. Finally my pain management doc convinced me to go back to the first Rhuemy because she really is the best in her field. Thankfully I had taken pictures of my butterfly rash, other rashes, my water retention and swelling, she took one look at the pictures heard my symptoms and diagnosed me on the spot for Lupus. This was about four weeks ago.

She said they suspected it years ago but that it is a developing disease and it takes time to diagnose and although extremely rare I am one of those people who have ana negative Lupus meaning all my ana markers are negative, however my CSR and ESR rates are off the charts, Vitamin D levels are nonexistent, I have the lung problem that happens to Lupus patients and the butterfly rash amoung other symptoms and criteria. She was treating me for Lupus way back then but because I didn't have the official diagnoses I got impatient and left and went through a lot of pain and suffering she said a lot of what I went through could have been prevented. I wish now I would have stayed with her because back then I had a mild case and now itís much more severe and I have organ involvement. I have been told by both her and my pain management doctor that itís going to be a rough road for me.

She put me back on prednisone which she didnít want to do because I was on it for over a year. However with my inflammation markers so high she didnít have a choice but itís only temporary, Iím also on planquneil (sp?)800 mgs a day, 50,000 IUD of Viatimin D a week, plus 2000 Viatimin D a day, Calcium, Fishoil, Folic acid. For now this is all she wants to start with to see how I respond and to see if they can get some of my blood work back down to normal then they will start attacking some of my other problems I have a list a mile long.

My known conditions are:

Failed back surgery syndrome
Lupus
Fibromyalgia
Sleep Apnea
GERD
IBS
Chronic Gastricitis
Ulcers

Surgeries:
Appendectomy - 2000
Teargland removal - 2005
2 microdisectomy/lamenectomy Ė 2004/2005
2 Fusions Ė 2006/2007
2 hernia repars (both included more than 5 hernias needing to be repaired in one surgery, the second hernia repair had over 10 hernias.) Ė 2008/2009
Gallbladder removal - 2009

Sorry for the long post and if you read it I appreciate it! Again any tips, tricks, advice etc would be greatly appreciated!!

Best regards,
Barb

 
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Old 05-18-2010, 11:20 AM   #2
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Join Date: Mar 2007
Location: USA
Posts: 968
goldyfm HB Usergoldyfm HB Usergoldyfm HB User
Re: Newly Diagnosed - Your Experience, Tips, tricks etc.

Welcome to the board, but sorry you have a need for us. I find it interesting that you have had a spinal insult as I find that history in quite a few that end up with some autoimmune disease. I am a dual autoimmune patient with both FMS and Lupus. I know exactly how you feel. I will say that I initially got the FMS diagnosis and like you, I switched Rhematologists before finally finding the Lupus. I have done better with the FMS symptoms since beginning treatment for Lupus. My wish for you is the same. I also have had spinal surgery but not to the extent that you have. I ruptured C-6 and C-7 vertebrae by just slapping the alarm clock one morning and ended up having a plating of 3 vertebrae, as was discovered I had a congenital fusion of C5-6. I thoroughly agree that a spinal insult is definitely involved in the onset of FMS symptoms.

I went through a myriad of medication trials for the FMS and progressively worsened until I began the Lupus treatment. It is difficult at times to pinpoint exactly what is the cause of some symptoms when one has dual diagnoses. I will say that I am only on Lupus meds as the FMS treatments did nothing to improve my symptoms and actually made the cognitive and malaise much worse. I do know that every individual is unique and what works for one person may not work at all for another.

I use a combination of Tramadol and Flexaril for pain management not because that is all I need, but rather that is all I can tolerate. I have multiple medication allergies that preclude having any heavy duty pain relief. I try to use topical anesthetics (Biofreeze and Lidoderm patches), heat, and warm baths, and rest to control the majority of my pain, but it is a challenge at times.

If you have not read the sticky posts at the top of the Lupus Board, I suggest you do so. There is a reference to a link in the one concerning lab tests for Lupus that addresses the challenges of diagnosing and treatments for one who has both Lupus and FMS. I think that you will find the information an interesting read. It helps to understand the conflict in treatment in those patients.

Welcome to the boards and I hope you find some answers to your questions. I am sure others who may not be as treatment challenged may offer some helpful hints on dealing with the day to day issues.

 
Old 05-20-2010, 02:01 PM   #3
Senior Member
(female)
 
Join Date: Nov 2004
Posts: 128
galpster HB User
Re: Newly Diagnosed - Your Experience, Tips, tricks etc.

Quote:
Originally Posted by goldyfm View Post
Welcome to the board, but sorry you have a need for us. I find it interesting that you have had a spinal insult as I find that history in quite a few that end up with some autoimmune disease. I am a dual autoimmune patient with both FMS and Lupus. I know exactly how you feel. I will say that I initially got the FMS diagnosis and like you, I switched Rhematologists before finally finding the Lupus. I have done better with the FMS symptoms since beginning treatment for Lupus. My wish for you is the same. I also have had spinal surgery but not to the extent that you have. I ruptured C-6 and C-7 vertebrae by just slapping the alarm clock one morning and ended up having a plating of 3 vertebrae, as was discovered I had a congenital fusion of C5-6. I thoroughly agree that a spinal insult is definitely involved in the onset of FMS symptoms.

I went through a myriad of medication trials for the FMS and progressively worsened until I began the Lupus treatment. It is difficult at times to pinpoint exactly what is the cause of some symptoms when one has dual diagnoses. I will say that I am only on Lupus meds as the FMS treatments did nothing to improve my symptoms and actually made the cognitive and malaise much worse. I do know that every individual is unique and what works for one person may not work at all for another.

I use a combination of Tramadol and Flexaril for pain management not because that is all I need, but rather that is all I can tolerate. I have multiple medication allergies that preclude having any heavy duty pain relief. I try to use topical anesthetics (Biofreeze and Lidoderm patches), heat, and warm baths, and rest to control the majority of my pain, but it is a challenge at times.

If you have not read the sticky posts at the top of the Lupus Board, I suggest you do so. There is a reference to a link in the one concerning lab tests for Lupus that addresses the challenges of diagnosing and treatments for one who has both Lupus and FMS. I think that you will find the information an interesting read. It helps to understand the conflict in treatment in those patients.

Welcome to the boards and I hope you find some answers to your questions. I am sure others who may not be as treatment challenged may offer some helpful hints on dealing with the day to day issues.
Thank you for your reply. I am not on any treatment for my Fibro either because I didn't find anything that worked either. I tried some newer medications that are out on the market but they made things worse for me especially Cymbalta now I know some people have great experiences with this but for me it was a living nightmare, I almost lost my life on it. So after that I decided no more messing with chemicals in my brain and have done much better.

I am on some pretty heavy hitting pain medicine for my back and nerve medicne for my leg. That will be for life because I can't move without it. I know this because I went off all medications for a period of time to make sure my pain wasn't being increased by my pain medications it wasn't.

The Lupus meds are beginning to make a difference especially in my joint pain which is awesome I find instead of all bad days I have a couple of decent days thrown in the mix. But the fatigue is still a killer and the planequl (sp?) is causing me massive headaches so I may have to change medications on this. She told me to go every other day for the next 4 weeks to see if this helps if it does then I have to change. We will see.

Thanks again for answering!!

 
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