So, I have classic fibro (i know there's been a lot going on about EDS and lupus and lymes, but I have been looking at the info and i only fit into the Fibro catagory), but while i always read that fibro doesn't ever cause inflammation, i end up like Popeye when I flare because my arms swell up so huge! I also have very very sore spots under my arms on my ribs that make it impossible for me to wear a normal bra. i have to go braless or use one of the stretchy ones that's more like a trainer than a bra...
Anyway, I want to know if other people swell up when they flare, or if this is just me. My knees swell, my forearms and fingers swell, and my upper arms and armpits swell so much that it hurts to even put my arms down by my sides. Is this just me thinking that I'm swollen and misinterpreting the pain as fluid build-up? I *know* that my forearms get bigger when I flare, and i can only assume that's inflammation...
Ice and tight wraps/braces help push out the inflammation and make me feel okay for a while, but the nerve pain is the worse. my ulnar nerves feel almost constantly irritated now-a-days, and i can't rest my arms on anything without causing pain or tingling. If i sleep on my back both my arms fall asleep and it hurts like *hell* when they wake up and i have to go through the burning and tingling awfulness. Worst part is, my instinct is to rub the pain out, but rubbing a painful nerve just makes it worse! (I'm off-topic now, but just needed to vent about these darn nerves! it feels like my funny-bone in my elbow is being whacked, 24 hours a day!)
Let's revisit the psoriasis question. Could those sore patches under the ribs possibly be psoriasis? It can go there (under the bra area.) This also relates to psoriasis: do you have any pitting of the nails or do any look like they have a brownish oil stain under them?
I have no skin irritations under my arms/in the bra band area...as far as my nails go, i have one toenail on my left foot that has a white sort of circle on it, but mostly my nails are pink and healthy. I don't have pitting on my nails, but they do have ridges vertically (from nail bed to tip) if I look at them in the light.
Do you have any rashes or itchy patches anywhere else? Even in your mouth? Behind your ears? Belly button? Seriously, psoriasis can go anywhere.
Or it could be another type or arthritis. I'm just not sure if fibro would cause people to swell up like this, although some swelling is noted in fibro. But to this extent? I'm not sure.
Have you had any tests done to rule out autoimmune illnesses? (I see that Angel is also asking about this, so we're on the same trail.) Did your rheumatologist give you any information on what WAS causing the swelling? Did she explain why she thought it wasn't RA? Sometimes it takes a while for autoimmune diseases to manifest themselves, so you might not know from the first test...
I hope you don't mind the questions. I'm hoping to have something come up that might sound familiar so I could suggest that you ask your doctor about it. Regardless, you really need to see your doctor/rheumatologist about the swelling.
Please let us know more so we can try and help you.
PS: Have you been tested for allergies, like food allergies and the like?
Hi pixie, These symptoms sound horrible, I’m so sorry you are having such a hard time, sometimes my hands and feet feel swollen, they get red and throb, usually when I am warm or have them under to many blankets. However I have never had the swelling edema that you are describing, we do certainly suffer from some odd symptoms but that edema would scare me right to my dr.
Please keep us updated
Hugs & blessings
HI ITS SUZYQ I'VE HAD TISSUE SWELLING 5WEEKS PRIOR TO OCTOBER 25 THEN IT STARTED TO HURT BOTH THE SHOULDERS ITS LIKE WEARING THOSE HUGE SHOULDERPAFS FROM THE 1980S FIRST THING IN THE MORNING UNTIL LUNCHTIME BOTH HIPS BOTH KNRES SBD THE LEFT ELBOW MY PRI.ARY PERSCRIBED AN UNORTHIDOX DOSAGE FOR PREDNISONE WENT TO SEE MY RHEUMI AND THE PA EXAM BY BOTH AND BLOOD/URINE TESTS HAVNT HAD SNY SINCE LAST JUNE IF NOTHING I THINK THERE WILL BE CHSNGES PERSCRIBED PREDNISONE IF IT DOESNT HELP HELL ORDER A BONE SCAN SHES A FORMER CMS NIW NUCLEAR IMAGING TECH MY SJSTER WHO COMES WITH ME. I HAVE 2 SISTERS. ETH SND CARA IM GLAD HELL ORDER IT THE DR APPOINTMENTE NOT UNTIL DECEMBER 28 AND ITS ON A FRIDAY LATE IN THE AFTERNOON 4:15PM SO THE TEST WILL HAVE TO WAIT UNTIL MMONDAY NEW YEARS EVE OR WEDNESDAY JANUTARY 2 MSYBE NOTBTILL THURSFAY THEN ILL HAVE TO ASK IF ITS SAFE FOR MR TO TRAVEL HOME I LIVE 3-4 HOURS AWAY FROM DES MOINES IOWA I LIVE IN FT MADISON MSYBE THE MEDS WILL WORK IF NOT ILL HAVE THE TESTAND WAIT UNTIL ITS SAFE TO COME HOME WITH PROBABLY ANOTHER PERSCRIPTION HES MOT SURE OF THE CAUSE BESIDES FIBRO I HSVE HYPOTHYROID MARFAN HABITUA CONNECTIVE TISSUE DISORDER DIAGNOSED BY THE HEAD CARDIOLOGIST AT THE UNIVERSSITY OF IOWA CARDIOLOGY CLINIC AND SCOLIOSIS CURVATURE OF THE SPINE
Yes fibro is not an inflammatory illness so it’s definitely not that. Rheumatoid arthritis is though. Sounds like they need to investigate more into your blood and X-rays etc. hopefully you will find your answers soon and get some help for it.
Hi Pixie, I have swelling with my flare ups too, all forums I have discussed this on say it’s not related to the fibromyalgia. However I disagree I have high blood pressure too and I also sweat very badly, so even when it’s cold outside like it is now I only can wear a tshirt. It’s just part of the vicious circle I’m stuck in. I have had every blood test and MRI scans and ct scans looking for answers. But the only thing that my rhumetologist puts it down to is fibromyalgia. Good luck and hugs to you Nick.
I was tested for cushings and lymes, and lupus, insofar as one can be tested, and saw a rheumatologist who told me i didn't have anything and sided with the 'it's psychosomatic' docs :/
I have had tick bites, but have never noticed a rash from them. I do live in a lymes-heavy area, but the blood test my doc had done was negative. I've also been treated for slight hypothyroidism at one point. Doc put me on levothyroxine to see if it helped, and it didn't seem like i was feeling better, so she took me off. My thyroid hormone levels were just a bit off normal, but she thought it was worth a try.
I've been tested for very basic outdoor and indoor allergies, which turned up dustmites (severe) and mold/fungus (moderate). No allergy for wheat was found on the skin-prick test, and no celiac disease was diagnosed (just IBS) during my colonoscopy and biopsy. I do, however, eat gluten-free, because even though it didn't show up on the scratch test, I know it affects me, and two different 'alternative' doctors have told me to stay far away from it.
Oh my god, the sweats are the worst. I can be physically cold to the touch because I've opened every window in the house in the dead of winter, but i'm still freaking sweating. I wear just a tank top and my undies 99% of the time i'm at home. Good to know someone else has these symptoms and can only attribute it to fibro...
Good idea! As Angel said, things can change. From what I understand, auto-immune diseases don't always show up on blood work right away. It would be a good idea to re-check these things if they weren't done recently. And as for the lupus test, my understanding is that if you're out in the sun the day before the test, you're more likely to test positive in your ANA, if you have lupus. So getting SOME sunshine the day before the test is a good way to see if you are inclined to lupus.
Pixie, do you have any relatives with auto-immune diseases, such as lupus, rheumatoid arthritis, psoriasis, Parkinson's, Sjogren's Syndrome, etc.? Having a relative with an auto-immune disease can sometimes shed some light on whether or not auto-immune diseases run in your family.
Interesting about the sunshine and lupus. i'm definitely having my vit D levels checked, as I've been hearing that we with fibro can have low D levels.
Not that I know of. I have mostly thyroid problems and things like heart disease and high blood pressure, along with a whole slew of mental illness on my father's side, but I don't know of anyone who had an autoimmune disease. :/
Closest I could come to is my paternal grandfather, who refused to eat light bread (now we suspect because he realized gluten made him sick?) and was always very rotund and red-cheeked. He coughed very hard and phlegm-y on a regular basis, so I suspect post-nasal drip, He snored, so probable sleep apnea, which was passed to my dad, who regularly shakes the house with his snoring.
Since Fibro dicks with serotonin perhaps the serotonin deficiencies and related illnesses found in that side of the family such as schizophrenia and depression are just a different way of the weird serotonin coming out?
Well, oddly enough, many people with fibro also tend to have thyroid problems.
It's possible that your grandfather did have a gluten intolerance. What's the most obvious manifestation of an intolernace, other than, say a rash? Refusal to eat the product that causes the illness. Snoring also could indicate sleep apnea. I presume that you're not a snorer?
You know, it wouldn't surprise me if a connection was made, since, as you say both mental issues and fibro have issues surrounding serotonin. Vitamin D is another one that seems to be related, as in insufficient levels of it in those of us with fibro.
I do really wonder and worry about your swelling issue, though, Pixie. I do think it merits looking into farther. Warm to the touch also sounds like some sort of an arthritis issue going on. I hope you ask your doctor about it. If it's the fibro, so be it, you can regal us with stories of your weird new fibro symptom. But if it's something more, like a degenerative arthritis, it really needs to be looked into ASAP and treated ASAP.