The concurrence of Lupus and Fibromyalgia: implications for diagnosis and management by Robert Bennett MD
It is increasingly evident that Fibromyalgia is a common accompaniment of lupus. In North America Fibromyalgia is amongst the 3 most frequent diagnoses made by rheumatologists (1,2). Many physicians feel uncomfortable with this diagnosis as there are no confirmatory investigations and current treatment is not very effective (3). Even when the diagnosis is correctly considered, physicians may search for some alternative (and more acceptable) explanation. If an abnormal test is found, it may be seized upon with an unrestrained zeal. Often this abnormal test is a weakly positive antinuclear antibody test (ANA) and the patient is told she/he may have lupus. Even when it is apparent that the diagnosis of SLE is incorrect, the patient is often reluctant to abandon this diagnosis. Two common clinical situations are seen in relation to these issues: (i) Fibromyalgia in a Lupus patient may be missed or denied, and (ii) Fibromyalgia may be misdiagnosed as Lupus.
Please read the rest of this article at http://www.myalgia.com/concurrence_of_lupus_and_fibromy.htm.
The Concurrence of Lupus and Fibromyalgia
Lupus & Fibromyalgia Analysis by hss.edu
Fibromyalgia is a disorder that can occur alone or secondary to connective tissue disorders such as lupus. Studies suggest that about 25% of people who have Lupus also have Fibromyalgia. It's important for people who have Lupus to know about Fibromyalgia for several reasons:
- Many of the symptoms are the same. For example, fatigue, joint and muscle pain, morning stiffness, hand symptoms without observed swelling, Raynaud's phenomenon (painful hands or feet in response to cold), numbness, and headaches can be seen in both of these disorders.
- The treatments for Lupus and Fibromyalgia are very different, but Fibromyalgia can get in the way of judging the Lupus activity. If you are being treated with immunosuppressive drugs for your lupus but have continued pain and fatigue, those symptoms may be considered evidence of continuing Lupus activity, when they might be Fibromyalgia. So there is the theoretical risk that you might be treated with higher doses of immunosuppressants and be at risk for their side effects, when such drugs don't help Fibromyalgia and may not be needed at that time for your Lupus. For example, among people with lupus, the occurrence of fatigue correlates more strongly with the presence of Fibromyalgia than with their degree of Lupus disease activity or damage.
- The proper diagnosis can alleviate anxiety. For example, if you have numbness and it can be determined that the cause is Fibromyalgia, that can be reassuring because you know it won't progress and cause more serious outcomes, as might occur in numbness due to lupus. Because Fibromyalgia doesn't have the same internal organ manifestations and potential for damage that Lupus-mediated problems have, symptoms may have a better prognosis (outlook) if they are caused by Fibromyalgia.
Discerning the difference is also important for research. Fibromyalgia seems to affect the validity of some of the measurements of Lupus activity. Whether a new drug works for Lupus or not can be hard to figure out if 25% of the participants also have Fibromyalgia and are having symptoms for that are erroneously labeled as Lupus activity.
Please read the rest of this informative website at http://www.hss.edu/conditions_14358.asp.
Dealing with Divorce
My mom and biological dad never married for a couple of reasons. They were both very young and my dad was quickly on the path to alcoholism. My real dad was always a part of my life. Sometimes he lived with us and my mom supported him - even though they weren't together, and sometimes he lived somewhere across the state. He would call a couple of times a year, until he died in 2002.
Mom finally got married when I was about 14 or 15 to an older guy who owned an appliance repair business. He was a really nice guy, but quiet and different than both of us because of the age difference. I was a teenager who liked to spend time on the computer and he didn't understand that. Even though he didn't understand it, he was still a great step-father. I ended up moving out (finally) and in with my boyfriend. It was a good thing for me because my family relationships were struggling. I didn't relate to anybody, and I'm happier and a lot less stressed to be living out of the house.
After I moved out my mom and her husband's relationship steadily declined and they finally divorced in December. It's awkward and difficult. How am I supposed to talk to my step-dad about still wanting to maintain a relationship with him? It's hard for me to maintain one with anyone anyway, because of my limitations physically and transportation wise. He doesn't live movies or music or anything that I do. But, I can't lose another father. He has been so good to me and the last thing I want is for him to disappear and never speak to me again. I've decided to write him a letter. I've been thinking a lot about it the last week or so. It's affecting me more than I thought it would.
Just came to a realization...
It's definitely random and definitely depressing, but it's my blog.
My mom and dad were teenagers when I was born. They broke up a year later. He was a severe alcoholic who drifted in and out of our lives for most of my childhood. My memories of him are mixed. Some are good, but most are of him being drunk, or going through the DTs. But other than being exposed to that, which is a bit damaging, we had a decent dysfunctional relationship (if that makes any kind of sense.)
He was diagnosed Bi Polar in 2004 while he was living across the state. This was the same year that I became extremely ill and also my high school graduation. I hadn't seen him for a couple years, and he was coming to Spokane and wanted to stop by and see me before he left town. I waited all day long for him to call and let me know he was on his way. That evening, my mom arrived home from work at about 6pm. There was a note on the door from my dad saying he stopped by and nobody answered, so he was heading out of town. I didn't hear him knocking, because my room was in the basement. When I read the letter I immediately sank to the floor and started sobbing. Somehow I knew it was going to be my last chance to see him.
He committed suicide a month or so later. Not because of this incident, but because he couldn't handle the disease and addictions that had made his life so miserable.
My realization is that I always carry my phone with me. I feel a sense of regret and guilt if I miss a phone call or miss someone knocking on the door. It's less so with the phone and more with the door. Even though I know I won't miss the door being knocked on because of Stamps, I sit and listen for it and worry about missing it until someone arrives.
Some reassurance.
Sean and I met with a lawyer today. She's going to represent me for my hearing before a judge for SSI. But it could end up taking ten to twelve months to get my hearing date. My medical records will be retrieved and paid for by my lawyer, and she'll charge me later. It was a pretty brutal day to eb relying on the bus system, but Sean was there to help!
My blood pressure is high.
I actually haven't taken my blood pressure, but it feels high, I tell ya.
While in grade school and high school, I was never faced with sexism. But, as an adult, I notice the way men treat each other and how they sometimes treat me different. My opinions (if and when they're ever heard, and not talked over.) are usually scrutinized more, simply because it's coming from me. It's pretty disrespectful and disappointing, especially when it is coming from someone you are close friends with.
NYT: Is Fibromyalgia Real?
In this article by the New York Times, the new medication approved for Fibromyalgia treatment, Lyrica, is discussed. As well as discussing whether or not the disease actually exists.
Since I was prescribed Lyrica about two weeks ago, I wanted to respond to the article. And what better place to do so than on my blog?
First to address the questioning of Fibromyalgia's existence. There are still many people, including doctors, who don't believe it is a real condition. Which means (at least to myself) that these doctors think of it as 'lazy woman syndrome'. Fibromyalgia, and even Lupus, have been stigmatized as that for a lot of years. Even now, when there is more scientific research related to each illness, people deny it. And the only reason why, it seems, is because they can't figure out how to treat us. Why should we be branded liars, because you can't find the answers?
I need to state that I have not been paid by drug companies, as some nuts pushing herbal Fibro "cures" may imply. Since I started taking Lyrica - I've felt fantastic. Better than I've felt in five years. I have been sleeping better. I've been going on walks. I've been more motivated and energetic. I still need the pain medication but not nearly as much. I've cut down half from what I was taking before. I've been in a better mood. This medication has been a lifesaver so far. I have a little bit of hope. As for the side effect of weight gain - it's a good thing in my case. I've lost over 30 pounds in the last year due to lack of appetite. I was swallowing food whole with a drink of water for awhile, just to get some sugar in my blood. The Lupus is still very debilitating as I have extreme photosensitivity. Photosensitivity is a side effect of Lyrica, as well, so I'm getting hit hard when I go outside or to the store.
Basically, if you have Fibro, I suggest giving it a try and seeing if it's for you. Don't listen to the nuts.
Treating Fibroymalgia with Marijuana
"As far as Fibromyalgia is concerned, no specific clinical data exists on cannabis' ability to combat the symptoms of the condition. However, some patients report anecdotally that the drug benefits them. In Iowa, USA, a court judge has allowed a Fibromyalgia patient to use cannabis while on probation to effectively treat his chronic pain.
It does seem likely that cannabis alleviates some symptoms of Fibromyalgia. Cannabis' potential as an analgesic and anti-inflammatory have been documented by the Institute of Medicine, National Institute of Health, and others.
Additionally, cannabis has a long history as a sleep-inducing drug. One study of fifteen insomniac patients reported that over a five-week period "sleep quality was significantly influenced by 160 mg of cannabidiol (a non-psychoactive cannabinoid) as two-thirds of the subjects slept more than seven hours and … most subjects had few interruptions of sleep." An Italian research team reported that subjects who had inhaled cannabis within the last half-hour had significantly higher melatonin levels than those who abstained. Melatonin, a hormone produced by the pineal gland, is widely used to treat insomnia."
This website has a question and answer type setup. Someone asks "Is Marijuana ever prescribe for Fibromyalgia?" and a variety of people from around the world respond with their own experiences.
Withdrawing from Cymbalta
I'm withdrawing from Cymbalta and they're really bad its been two days and I should be getting more in the mail tomorrow but this is insane!
The Hunt for SSI + Other Things
Every year, the week before Christmas, I get a terrible chest cold / sinus infection that lasts forever. This year was no different than the previous two. I'm sitting here sick, nursing a partial root canal that was done yesterday, and trying to get some jewelry orders filled before Christmas and send off last minute gifts.
After my last denial about a month ago, I contacted some lawyers. They were extremely rude, short fused and irate with me. Besides that, they had the same old doubtful attitude about Fibromyalgia & it's existence in me. He even said, "Lupus is one of those things you can't definitely diagnose." I was just shocked that someone who is supposed to be wanting my business, someone I'm supposed to be giving money to, was treating me like this. We scheduled an appointment to meet, but I canceled. When asked by his secretary if I wanted to reschedule I said, "Uh, definitely not."
I contacted another lawyer whose legal assistant told me to acquire my medical records from DSHS and all of my other and previous doctors. Unfortunately I don't have $50 to drop on each doctor whose records I need (would amount to at least $100 to get all my records immediately - I just CAN'T afford that. there's no way.) BUT - I did get my records that DSHS had on file.
On top? A letter from my current specialist doctor in September stating very clearly "SHE WILL NEVER BE ABLE TO RETURN TO WORK."
So much validation just in one photocopy.
After all the bullshit I've been through with doctors and government agencies and lawyers.
I can't even express how much relief just that paper gave me. Just that sentence. I'm not crazy, I'm not lazy, I'm not anything that uneducated, self-absorbed people want to believe I am.
Happy Holidays everybody.
xo swiss
Fibromyalgia Harder to Cope With Than Other Conditions
"Research says with a high level of certainty that Fibromyalgia sufferers find it more difficult to cope with their illness and the symptoms and effects than of other rheumatic illnesses. Among the studies Fibromyalgia sufferers' most common complaints are: worrying about whether their pain will end, anxiously wanting the pain to go away, unable to stand their pain."
Please read the rest of the article at http://www.ei-resource.org/news/fibromyalgia-news/fibromyalgia-harder-to-cope-with-than-other-conditions/
It's Another One of Those Angry Times
Where so much stupid bullshit has built up into this massive pile of anger, frustration, stress and depression inside of me.
I got my denial from SSI again. I now have to appeal before a trial judge. I have to somehow find a lawyer, after all the ones I've already talked to have basically told me it's going to be impossible.
I actually have good news, for once!
At least on one battlefront!
Department of Social & Health Services actually hooked me up with an amazing caseworker. She has Lupus & Fibro. also, and is working hard on my behalf to make it so I don't have to worry about things.
I also sent in my disability function report for myself and the one Sean filled out for me, into my adjudicator. I wrote a lot, and tried to not forget anything. I'm really hoping they don't blow off my photosensitivity. I'm willing to go get tested for it. I'm actually willing to expose myself to the Ultraviolet so that they can see what it does to me.
SSI Letter from Me.
Hey guys. Sorry I didn't get back to all your comments yet, but I got them and I sincerely appreciated everything you guys suggested and said. Thanks so much for being so supportive, and I'm always thinking of you guys and hoping your bodies are doing better than mine. ;)
So, this is the farthest I've gotten with disability. Someone finally called me and said he was sending me an activity form and also one to my mom and to my boyfriend. He said I could type a paper of my view of my condition, as many pages as I want.
I decided to really get on it today, and this is what came out - sort of stream of consciousness.
+++
In 2002 I was diagnosed with Evan Syndrome. That summer, I went through Methotrexate and Rituxan chemotherapies. The Rituxan put me into remission. By late 2002 I had already gotten myself a job as a customer service representative at the mall information booth. I loved my job, and was feeling good again. I decided to enroll in community college for the 2003 school year.
In December of 2003, I became sick with the flu. I took a few days off, went back to work, and it just steadily got worse. From December 03 to February 04, I missed several days of work, was hospitalized twice, and I just couldn't seem to get better. I was doing school and work, and I had to make a choice. I decided to quit my job. I soon had to quit school too.
I relapsed remission in Summer 2004, and was treated with more Rituxan. After another successful Rituxan treatment which put me into remission again, I still didn't feel the same. Since then, I haven't been able to work, because of my exhaustion, weakness, pain and extreme sensitivity.
By 2005 I had been diagnosed with Lupus and Fibromyalgia. My doctor didn't inform me much about my illness, and I didn't learn until recently that not only do I have a bad reaction to sunlight, but a worse reaction to any fluorescent lighting, as do a lot of Lupus patients. I've been taking steps to avoid sunlight and UV rays at any cost. I use SPF 15 moisturizer on my face, then I apply another layer on my face and head to tow with SPF 55. I also wear a hat and long sleeves, but they don't shield very well. It only takes about 20 minutes for me to have a reaction to fluorescent lights (sweating, tiredness, shaking, weakness, and nausea.) and you can't go anywhere without fluorescent lights nowadays. It's even to the point that regular incandescent bulbs could be banned altogether. After being exposed to fluorescent lights and sunlight, I am also more susceptible to getting sick or having a Lupus flare, which makes every part of my body a lot worse.
My daily routine isn't very fun. It's incredibly frustrating for my body to be so physically exhausted, while I want to be doing something productive. If I push myself too hard, it makes everything worse, and I've learned that by now. I have a lot of allover aches as well as a very low pain threshold. I have Fibromyalgia tender points which I'm always bumping into, which is excruciating. I can't sleep at night because it hurts to lay on my body: I can never find a comfortable position that doesn't feel like I'm putting pressure on a bruise somewhere on my body. There is always an area of my body that is in pain. It just never ends.
It's like the Lupus and Fibromyalgia treatments cancel each other out. I want to get more exercise and work my weak muscles, but I can't be out in the sun, I can't be under UV rays, it hurts to move, it hurts to lay. I get lightheaded, weak and nauseas when I do any kind of physical activity.
My stress levels are still through the roof, which isn't helpful at all to the illnesses I have. When I have a panic attack, I get sick. I have panic attacks, when I just can't find any help. My doctor from 2002 - 2006 was abusive and cruel, causing me to have a bad nervous reaction when at an appointment or calling my doctor. I feel like I've tried every possibility to get someone to notice that I need medical attention that is impossible for me to supply to myself, and either nobody can or nobody wants to hear me.
+++
Suggestions? Help? PLEASE.
More Doctor Babble that is probably Repeats of Information.
You guys know how it is though, not feeling good = no motivation.
I'm going to try to make this post as summarized as possible, and if you have any questions or want me to clear anything up for you, just comment. :)
When I was 17 I was diagnosed with Evans Syndrome and started seeing a pediatric oncologist. It took three biopsies to figure out what I had, because it was that whole process of elimination thing. I saw him from 2002 until 2006, even though I was way past pediatrics. The reason I kept seeing him was because I was on horrible state medical and no rheumatologist on the planet would accept it. I had no choice. He insisted I call him when I was sick or had any problems, rather than going to a general practicioner, which you're apparently supposed to do.
Through those years that I saw the ped. onc. he was a really strange guy. My mom and I didn't like him. He made us wait in the waiting room for literally four or five hours every appointment, and for a long time we were going to appointments every week. When we did get to see him he would babble on endlessly about horses. His responses to things like yeast infections were, "That's a hygiene problem." Everybody knows yeast infections are common in people with low immune systems. He made masked sexual remarks re: my boyfriend and I, he would prescribe me 20 pain pills at a time, saying I could take one every four hours. When I called back for a refill, he would yell at me, even though I took them as prescribed and as needed. We finally had to stop seeing him when he told me one day that I was going to need Cytoxan. I came back on the day of the appointment, and nobody had even set the appointment. Apparently now the doctor wasn't sure he wanted to do Cytoxan. So I spent upwards of a month preparing myself mentally for this challenge. I was absolutely terrified. His response by my angry reaction? To act like it was my fault. Not only that, but while I'm sitting there crying my eyes out, he says to my boyfriend and mom, "She must be really difficult to deal with when she's like this." They were shocked and I stormed off.
At the next appointment, I had figured out another doctor. My grandma convinced her rheumatologist to accept my insurance. Dr. 1 said he would send Dr. 2 my entire chart, meet with him, talk with him regarding my case. Three months later when I arrived for my appointment with Dr. 2, Dr. 1 still hadn't sent the chart. The faxed half of it and gave up. It's the most pathetic excuse for a clinic on the planet. He mentally abused me for years and I allowed it because I didn't know any better, and now there isn't anything I can do about it. Don't let yourself get treated like this by a doctor, because now I have a doctor who cares and I know I didn't need to be treated like that.
Anyway, now I'm re-applying for disability and Dr. 2 can only describe my state for the last year, not for the last 6, and Dr. 1 is a jerk who won't respond to our calls. Is that even legal?
Disability Redetermination called me today and are sending me another form to fill out. The guy I talked to was very nice, and said I could attach as many pages as I needed describing the state of my condition, in my eyes. He is also sending forms to my mom and Sean.
I may have a chance, then again I say that each time around.
Denied!
50 Ways to Encourage a Chronically Ill Friend
Somebody just posted a bulletin containing this link on myspace. This is so awesome - please please please check it out. http://www.everydaygivingblog.com/2007/0
DENIED!
So I received a denial letter from SSI Disability. Except this time, I didn't flip out. For the first time since I've been applying, I haven't completely collapsed into an anxiety attack. I think it's partially because I slept most of the day and feel like I'm getting sick, but also because this time the letter actually made me feel like they took out a little bit of time to look at what was going on with me. (I've made my responses to parts of the letter ::red::.)
July 23, 2007
We have determined that your condition is not severe enough to keep you from working. We considered the medical and other information, your age, education, training and work experience in determining how your condition affects your ability to work.
You said you are disabled due to Evans Syndrome, fibromyalgia, Lupus and RA. The records support these conditions and limitations, however, they do not preclude all work activity.
[ The problem with their decision is that it is based on a questionnaire which, while being something like 15 pages long of repeat questions over and over, isn't that in depth. I have four conditions that all result in different and opposite results, making my health extremely unpredictable. I feel good one day and absolutely miserable the next. This makes it impossible to hold any job. Also, my environment directly contributes to the way I am feeling. Meaning any type of stress, loud noises, etc, but also things like fluorescent lights which I'm extremely sensitive to. ]
In addition, your anxiety is currently under control. Based on your description, we have determined that you can perform the type of work you have done in the past as a cashier. Because you can still perform some type of work, you are not considered disabled and your claim is denied.
[ Funny, I didn't realize I had been treated for anxiety by anyone. Other than being on Cymbalta by my rheumatologist (which while it is an anti-anxiety med, it is also a time released anti-depressant and pain reliever as well.). By the way - Cymbalta is something commonly prescribed to people with Fibromyalgia, so it's not directly related to anxiety. While my rheumie knows I am constantly anxious, they haven't done anything to treat me for it. I have been unable to find any kind of mental health, which means I'm in a constant state of worry and have two or three panic attacks a week. Nobody has even asked me about this, and if they had - I would've told them exactly that. But somehow they have determined that my anxiety is under control. Weird. About me being a cashier - I was a cashier under fluorescent lights which made me physically sick every single time I worked. I didn't know this was what was making me ill until this year, because my doctor never informed me that Lupus caused me to be sensitive to fluorescent lights. ]
Needless to say - I'm appealing. I've already called and requested the forms.
Is it normal
for people with Fibromyalgia and chronic health conditions to be really anxious and stressed out by their families?
I don't see them very often. After I moved in with Sean, since I don't have transportation, the only times I see my mom are when I need a ride to the doctor. She does it on her day off, and claims to understand that I desperatley need help and says that it's not a big deal.. But then she acts agitated if I ask her to run me by one more place, or if the waiting room time is really long. She says things like 'It's okay, but my whole entire day off is gone.' And I feel saying that I'm really sorry I'm such an inconvenience. But when I -do- say that, she acts as if it's a completely absurd notion to even think of. Yet everything she does, tells me she is burdened and annoyed by me. Same with the rest of the family. They don't seem to realize how ill I truly am, seem to blow it off or downplay it. They don't consider how easily affected I am by stress. They don't realize that the things they say to me most of the time, really hurt my feelings. I cry almost every time I see any of them. Often times I have panic attacks after it.
It's immensely frustrating to be having anxiety attacks and worrying all the time, but where am I to go to get help for it? No counselor will accept me because of my lack of insurance and I have absolutely no way to pay for it. I'm at the end of my rope, I'm so anxious and I desperatley need some sort of help with it. If anybody has any suggestions as to what I can do to get me SOMETHING that will help with anxiety. Where do I go? (And please, don't say meditation. Because I try it, and this anxiety is on a completely different level. While focused breathing and meditation helps for small anxieties, it does no good when I'm having a panic attack.)
I'm so stuck.
I saw SICKO and it made me feel even more hopeless and stuck.
rituxan and prednisone
at my doctor's appointment on tuesday i was told that i should probably go back on Rituxan soon..
I was also told to withdraw from Prednisone one more mg, so I started that yesterday.. And at the moment I have severe menstrual related symptoms, in addition to it being hot. i haven't been able to mkae myself food for a couple of days. yesterday sean made me hashbrowns and i had a salad with meat and veggies last night.. today nothing... first time i've had a really bad hypoglycemia attack in awhile. i started shaking and sweating uncontrollably.. had to go lay down. i ate some chips and a glass of juice.. i just don't think i could eat anything else and i definitely can't make anything. no money to orderstuff, so im just going to wait until sean gets home.
Gross post!
The first thing I've posted that is explicitly gross and graphic. I'm writing this blog, partially, to make people aware of the various little daily things that people with compromised immune systems have to deal with, that other people typically don't. We're so much more susceptible and sensitive to illnesses and reactions, that if something can happen - it probably will.
A couple of months ago I had a really awful sinus infection. There was mucus until no end, a tingle in my right nasal cavity that was so painful I had an ice pack on it most of one week. After that, I developed a painless bump on my lower lip. It wasn't mushy, there wasn't any blood or even anything for blood to come through, so I didn't worry too much. After a week or two of having it, I got a little freaked out - thinking it was a lip tumor or something. I researched and discovered it was likely a mucus filled cyst left over from my sinus infection.
This giant bump on my lip not only affected my gorgeous smile (ha ha.) but was also in one of the most frequently 'bitten' areas on my mouth. I would try to eat and end up chomping down on my cyst, which I must have bitten a hole into because this morning, one little touch of my lip and out comes a mouthful of what looked like snot and blood. Sexy, yes? It tasted like a delicious chocolate chip milkshake, too.
Yuck. At least the giant bump is gone.
One of the hardest things to deal with
when you have Lupus and Fibromyalgia (or other autoimmune diseases) is the social aspect. It's extremely difficult to make and keep friends when you're ill. People are too busy and too wrapped up in their own stuff (not that that's a bad thing.) to care about what you're dealing with all the time. There's only so much they can feel for me. I constantly feel sick, so I don't like to leave the house. I have to apply a lot of sunscreen, which still doesn't shield me from feeling sick to my stomach being in any sunlight at all. It's a big hassle. I get tired easily, and I feel like I just bring everybody down and am a big pain to be around.
It's really lonely and depressing to always watch your friends go out and have a good time together at a bar, or go out to eat together, or just go do anything.. I never really get to be involved, like normal 22 year olds do.
I'm going through a flare and am just really lonely right now. I've felt this lots of times, and I'm sure readers have had similar experiences and feelings.
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