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My FIbromyalgia was a precursor to Lupus, and RA!!
10 Replies
jessielee72 - June 2

I am writing this post because I am concerned with people that have been diagnosed with fibro and are getting sicker. I wanted people to know I have been having symptoms for more than four years and have been to many doctors including great ones at MAYO CLINIC in Arizona. I was diagnosed at Mayo clinic by a great doctor there with fibromyalgia and was releived that I finally had a diagnosis and I was happy at least I knew what was wrong. But that all changed three months later, I became sicker and had more flu-like symptoms, the joint and muscle pain became worse and the fatigue was so bad I could not believe it. My doctor back home had tried me on savella to combat the pain and it worked but it made me even more tired. I began having rashes on my face, most of the time it was just my nose that turned red and felt hot to the touch. I went to my doctor for this so he ran some blood work which included an ana test, and sure enough it was positive, right then and there he diagnosed me with lupus. Now they set me up with a Rheumatologist in my area, and I finally got in to see him, and guess what, they did x-rays because of my joint pain, and discovered I have Rheumatoid arthritis also, and there may be significant damage because the disease was not caught soon enough!!! I am very angry at those docs who weren't smart enough to pick up on this awhile ago, especially one whom thought this was all in my head. Any way I do not mean to ramble, I just hope that if you have fibro and you are getting sicker and can't get your symptoms under control, please, please keep pushing your doctor, or go to another one if your not happy. There may be another problem besides fibro you are dealing with. I was also told that fibro is a symptom of an underlying condition or conditions. I highly believe that for sure now. I know you can have fibro alone, but if you feel something is not right do not hesitate to see your doctor!!!

 

Canada17 - June 3

It seems to me that you may have been misdiagnosed with Fibromyalgia when you really have Lupus. Two different diagnosis but very similar symptoms. It is very good that you are now receiving appropriate treatment.

It is my understanding that Primary Fibromyalgia is not a symptom of an underlying condition but a condition unto itself. However, Secondary Fibromyalgia could be considered a symptom if it was brought on by an undiagnosed/untreated condition (like RA or Lupus).

Secondary Fibromyalgia can often be treated by treating the condition that brought it on and many people who have Secondary Fibromyalgia, if successful in treating the primary condition, can obtain full relief from their Fibromyalgia symptoms.

 

jessielee72 - June 3

You are exactly right. My GP at home told me that the fibromyalgia diagnosis was never right in the first place. It is just a scary thing how the body can really change in a heart beat. This all started with a 3rd case of mono that I had a few years back. I havn't been the same since. Thank you for your input.

 

tnichel - June 4

I know you are feeling all types of things right now after finding out you have RA. I'm sorry you have the disease but glad you are getting treatment. As far as the late diagnosis...my rheumy tested me for ra again even though i've been tested like 10 times. He says the tests for ra don't always come back positive and they have to use other symptoms to piece together the diagnosis. Most people who have fms get the diagnosis first and then are diagnosed with a immunological conditions. On average it takes 7rs to get a diagnosis of a immunological condition. Fms is kind of a way for your body to say "hey, something is not right" and that leads to another diagnosis. Like your situtation. Lupus is not a precursor to fibro and neither is any other disease. I have lupus so I understand where you're coming from. I got the fms diagnosis first...then lupus, then sjogren's syndrome. But you are correct in telling people to go back if things don't seem to be getting better. You're the captain of the ship and the doctors are there to help you. Also, just b/c some the lupus test panels came back positive, it doesn't mean you have it. Sjogren's is a close relative. Did the rheumy say you have lupus or is he just monitoring your situation right now for further evidence?

 

lucky13 - June 4

Your right about going back to the Dr if problems get worse. From the research I have done and from everything I have read Fibro is not a progressive disease so symptoms/illness should not get progressivly worse.

 

jessielee72 - June 4

My GP diagnosed me with lupus a few months back, he is the one that told be fibro was probably never the case. I finally got to see the Rheumatologist just last week, he was concerned about the joint pain so they did x-ray's and ultra sounds on my joints, they called me back within the hour and told me definately RA. During that same appointment, the Doc was pushing on my tender points, and told me that the sore places were fibro trigger points. So do you think fibro is still in the running on top of RA. This is definately confusing for sure. As far as Sjogren's Syndrome goes, I have wondered that because I am having to put tear duct plugs in my eyes because I am not getting any moisture, and am taking restasis, I think I do have that but we really havn't got into discussion about that.

 

Canada17 - June 4

You may in fact have Fibromyalgia, but it may have developed from your untreated RA and Lupus.

The funny thing about Fibro is that it is all a mystery. They don't know what causes it or why. They have found links, they know that abuse (any kind of it), infections, and traumas can lead to it. That being said, not everyone who was abused ends up with Fibromyalgia, and not everyone who has Fibromyalgia was abused.

Take me for example, since being diagnosed a year ago I have done extensive, often daily, research on the subject. I have now come to realise that I have always had Fibromyalgia. Certain "events" in my life have made it more pronounced over the years.

In addition, while I agree that Fibro is not a degenerative disease, it does get worse. As we get older, our bodies start to break down and become less and less able to heal themselves effectively. This means that the pain we feel will be felt more. I think this is also the reason why so many people who are diagnosed with Fibromyalgia are over 40 years old. A lot of younger people who may have it, have bodies that are more resilient, so the effects of Fibro are not felt as much or at all.

 

tnichel - June 4

Honestly, I would not rule out fibro. As I mentioned before, it's usually what gets diagnosed first. I don't have all of the fms tender points either. You may also be experiencing what is called myofascial pain (i.e. muscle pain) with trigger points. I started getting tested for all kinds of things starting at 20. I stopped seeing docs b/c they were draining my blood like vamps, made me get a bone marrow test for cancer(where they drill into your hip bone...horrible!) and I just lost faith in docs and gave up.

I was finally diagnosed with fms at 27...along with mild lupus...then sjogrens. You may have sjogren's...It's not uncommon to have multiple immune conditions. next time you see the rheumy ask if he's tested for it. A positive ana and can be indicative of lupus, sjogren's and r.a. I am blessed to have mild cases of lupus and fibro (that means the lupus isn't damaging my organs but the pain is just as bad as a regular case). Put the pain is the same no matter what.

The sjogren's and lupus affect me the most...there are hardly any meds to treat sjogrens. You kind of have to just deal. I don't have the telltale dry skin and mouth yet...but I do have problems wearing contacts sometimes. What meds did they give you for the lupus? I'm surprised you're on restasis and haven't been given a sjogren's diagnosis.

Sorry if I repeated stuff. Feel free to ask any questions and I'll help as much as I can. At least you're on the right track. Over time (about a year) will become adept at figuring out which condition is causing you the most problems at any given time but you have to get them under control or they'll play off one another causing an endless cycle of flares.

 

jessielee72 - June 5

Thank you for your input, I really appreciate it. I will definately bring up the sjogren's part up at the next rheumy appointment. Also, for the lupus my GP had tried me on plaquenil, because I suggested it. For a while it seem to be okay but then I started having really bad stabbing pains so I tapered off of it, sure enough that was it. They also wanted me to take a small amount of steroids every day until I go went to the rheumatologist because I stayed so sick and flared up all of the time, but the side effects came and I started growing side burns, black at that, so I tapered off of them and just dealt with the pain. Now that I am seeing the Rheumy, he put me on the methotrexate that is actually a chemotherapy medicine that acts as an immune suppressant in RA, I have to have my blood checked every two weeks for side effects such as liver damage since it is such a toxic drug but it really helps the progression in RA. I am waiting on blood work that they drew the day they did the xrays, still haven't heard anything on them, I am wondering if they are going to consider this just RA and not Lupus, there is a very fine line between the two. They think I also may have some kind of disease where I produce a certain antibody that causes vasculitis, any way I will let you know what I find out okay. I hope your symptoms are under control, and you don't have a whole lot of problems, The diagnosis of any problems like we have is nothing nice at all and I feel for you and every one dealing with this stuff. I for some reason didn't take the RA diagnosis real well, just because I was thinking of maybe going back to working as a barber, that I completely love I am afraid I may not be able to do after cutting my husband's hair the other day It flared me up automatically, really made me angry. Thanks for you all listening

 

chucksusanandgrace - July 30

I just wanted to mention that a positive ANA alone is not a diagnoses for Lupus. I also have a positive ANA, and ACA (anticarlipin antibodies) and have a butterfly rash. But all of my Drs say it is not lupus. It is so confusing how all Drs are not in sync with their views on this.

 

kanodm - August 1

I was diagnosed with fibro about 8 years ago. I am much worse now. My memory is gone. I have lost whole blocks of time. I can't think of words and it is very frustrating. My joints are painful The eye Dr. says my eyes are very dry as is my mouth. I am very weak and fatigued.I had a positive ANA and the Dr. said since I didn't have a rash on my face I don't have lupus. I do get rashes from the sun and I do get a butterfly rash at times. My right knee is so full of arthritis the Dr. says he can't scope it anymore. I have been taking synvisc and cortisone injections. He says I need a total knee. I am depressed and totally exhausted. I can barely get up from sitting in Church or at a movie. My husband helps me. I am so stiff, weak and painful. I really can't take much more. I am going to a new rhuematologist in a few weeks. Hope he is able to help. The only Doctor who is trying to help me is my family practitioner. I don't think most doctors are out there to help because they care. They are simply running a business and trying to make as much money as they can off the backs of ill people! I know I am a registered nurse. I can't work anymore. I don't have the endurance,strength or memory to do it.

 

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