View Full Version : apologies for disappearing - oh and fibromyalgia
11-12-2006, 08:56 PM
hi, im sorry its been so long since i posted, i have been feeling pretty grotty and sleeping a lot lately but am back to being a bit more enthusiastic about things and am on the hunt for advice again
i saw my doctor this week and he has said he thinks i may also have fibromyalgia, i have looked this up and many of the symptoms are very like lupus.. i am not sure if he is saying he thinks he has mis diagnosed me - i dont have lupus i have fibromyalgia or whether he thinks i may have this too.. does anyone else have this problem and can you tell me if it is linked to lupus? the more doctors i see the more confused i seem to become
11-13-2006, 10:15 AM
A lot of us with lupus also have fibromyalgia too - it's common in about 25% of patients with diseases like lupus or RA, and the percentage is even higher in patients with Sjogren's syndrome. Since you've read up on fibro, you know it can cause widespread muscle tenderness and pain, overall fatigue, sleep disturbances and other symptoms which are similar to lupus. However, fibro doesn't cause abnormal lab results, as lupus generally does, it doesn't affect the joints, and while it can cause severe pain and disability, it does not cause ife-threatening illness or organ damage as lupus can. You doctor can diagnose fibromyalgia through a clinical examination focusing on trigger points. areas where the doctor presses. If more than a specified number of trigger points cause pain, then fibro is a likely diagnosis. It can be hard sometimes to distinguish between a lupus flare and a fibro flare - so if you have both, your doctor needs to verify that your lupus is more active through changes in lab results before prescribing stronger meds. Medications like prednisone can actually make fibro worse, so keep this in mind if your doctor recommends steroids.
Hope this helps.
11-13-2006, 10:32 AM
Hi! Welcome to the club! I have been diagnosed with SLE, Raynaud's, Fibromyalgia and Sjogren's. It is hard to distinguish which symptoms belong to which condition, so I have stopped trying. My doctor told me they are like "companion" conditions, which are causing similar symptoms for different reasons. It doesn't necessarily mean you don't have Lupus, it could mean you have them both. As Marycain pointed out, Lupus has blood tests that can diagnose it, and Fibro is found during physical examination by your doctor.
The best advice I can give you at this point is listen to your body, when you feel tired or fatigued, rest or sleep if you can. Take care of yourself, stay out of the sun, and my advice is to always research all prescriptions that are recommended by your doctor.
Good luck. Talk to you soon.
11-13-2006, 01:18 PM
hiya peeps, i dont know what i would do without you all, you seem to be able to give me more support and information than my doctor does!
what are trigger points?
on another thought.. i have been prescribed factor 60 sun block as the rash i have is pretty horrific,... i look like a vampire whos alarm clock stopped! i find that some times the block helps and sometimes it doesnt.. and sometimes i get the rash even if there is no sun.. any ideas? i hate the way i look at the momnet.. very vain i know but there it is :((
i have got to see the rhumatologist in december.. even though i have been waiting for the appointment since july i think.. so lets hope they can help a little more then
ironically, my next door neigbour has just contaced the DSS and told them that i am running a chicken farm (lol i have 40 show birds) and that i am claiming when i shuldnt be.. so now my benefits have been stopped while they investigate.. the irony is i dont even go in the garden except first thing in the morning when its cold and not quite light covered up all over so i can feed them and say good morning to them lol still it will put a bit of a damper on crhistmas if they stop my money - they say it can take up to 8 weeks! but hey other than that all is right with the world lolol
11-13-2006, 01:33 PM
It's too bad about your nosy neighbor. I hope that it doesn't take too long to get your benefits restarted.
Regarding the sunblock: remember that even when it is overcast, UV rays can still penetrate cloud cover. So, wear a hat and long sleeves. They even sell UV rated clothing. Research online. I carry an umbrella when I am outside. I am currently trying to find a decently priced umbrella with a UV rating because regular rain umbrellas still let some UV rays through.
Hope this helps.
11-13-2006, 01:43 PM
many thanks for the advice.. you use an umberella when you go out? i handt thought of that at all.. i nly think of that when its really rainy.. doh! i know i dont cover up a lot.. but i dont have to worry to much about sleeves as only my face is affected.. the rest of me looks like one of those books that you buy for children where the pages are divided so a nurse has firemans boots etc
11-13-2006, 02:00 PM
Dizzy, trigger points are certain points on your body where the muscles are especially sensitive - pressing on all these points with a certain amount of pressure is called a trigger point examination. A positive trigger point exam is one of the diagnostic criteria for fibromyalgia. If 11 of 18 points are painful when pressed, the exam is considered positive, Here is a link to an article that explains it better than I can.
Some indoor lighting can also emit UV rays, especially halogen lights and task lights that don't use incandescent bulbs. So you might check the lighting in your house or office, and make sure you are only using incandescent bulbs.
Peach - Coolibar has a reasonably priced umbrella that blocks UV - www.coolibar.com. TravelSmith and The Shady Lady have a good line of sun block clothing but they are more expensive. You can also buy a UV blocking fabric treatment in some sports supply stores. Some local branches of the American Cancer Society also use the UV umbrellas as a fundraising item, so if you have a chapter nearby they may have them.
11-13-2006, 05:09 PM
A full spectrum sunscreen may be more effective than regular sunscreen, too. My rheumy told me about one (can I mention the name?) called Blue Lizard. It works a lot better than the one I used to use, and I don't get the rash anymore if I remember to put it on.
11-14-2006, 05:56 AM
thank you will see wha ti can do.. i am gtting mine of prescription at the moment so will ahve to see what the doc is allowed to prescribe as sadly i cant afford ot pay full price for it