Do the development of, or worsening of other syndromes mean your RA is more active? This fall, my Sjogren's went from barely there to really, really awful. I also developed Raynaud's this winter and it is really bad as well. My RA isn't doing so great either... so...
Well other syndromes is antibodies attacking other parts of your body. I do not know if that means you are getting worse or if we are just genetically predispoded to these other syndromes. well I do know that the other sydromes make me feel more ill. So I tend to think it is a sign of getting worse physically. IDK?Idk Waddie. Maybe? I developed fibro fairly recently and I think I'm also developing reynauds. My RA certainly hasn't been "quiet". I kinda feel like I'm falling apart... *sigh*. I'll be interested to hear what other people think.
I hope you get some relief soon Waddie (( hugs))
Remember that in medical terminology "syndrome" is strictly a group of medical conditions. Syndrome is not a disease. Therefore, if you have Raynaud's Syndrome or Sjogren's acting up, what it translates to is that the disease[s], i.e., RA, itself is acting up.
Thanks Milly and Leila, its so frustrating! I mean, just having ONE thing is bad enough! I was kinda hoping with warmer weather, the Reynaud's would be better, but that isn't happening. My hands and feet are awful, either tingling or numb or burning sensation much of the time and my eyes!
My drs always said yes. My sjorgren's has been awful leaving the eye dr. very frustrated. He sends his reports directly to my rd since it's the RA meds that keep everything other control. Well, they are supposed to...Aww Waddie, I'm sorry you are so down right now. I wish I had some answers for ya too. I've wondered that same thing...(If it means your RA is getting worse) I remember reading several places that having other parts of your body affected other than your joints, means your RA is more aggresive. I can't remember what meds you said you are on. Is it possible after talking with your Rheumy to try something else? I have also read sometimes your body gets used to the medications you are taking after a while and they dont work as well, so maybe a change would help?
You sure deserve a break from all this...I hope you find something that will help.
Leilia: I sure understand what you mean about feeling like you're falling apart. It's always one thing after another...We have RA for cryin out loud...do we REALLY need something else to start going wrong too?
I am glad to be a part of a forum where everyone is so supportive and truly understands what each is going through. [/QUOTE]
Waddie - these are all conditions brought on by your disease. So yes, there is a correlation.well.... my RA is doing better! but my Sjogrens has worsened..... to the point that I'm battling some major eye irritations and on a pred drop too.
so... RA is better.... SS is worse.... go figure...
Well Babs just helped me prove my theory. There is NO understanding this disease at all!!!!!!
It's a simple theory, but it's the only one that seems to work for me.... ugh... phffffft....sigh..awww Waddie....I don't have any syndromes so I don't know but I'm just sorry you are not feeling well and hope you feel better soon!During the time when my ra was behaving, my raynaud's was always acting up. My ra has been getting worse the last few months, but I've not been bothered by raynaud's at all. So for me, there doesn't seem to be a connection.Snowowl may have something...?? I wonder if all the meds you're on are causing different problems? Have you talked with any of your doctors yet?Ladies, thank you all so much!
Waddie wrote: "Sam, I really never thought my Fibro, Sjogren's and, now, Reynaud's was actually because of my RA. Thanks for explaining this to me."
Waddie, let me clarify. Sjogren's and Raynaud's come with any number of autoimmune diseases. My best friend does NOT have RA and does NOT have Sjogren's, but her Raynaud's always seems to "herald" [precede] a flare. Her story is interesting. She was under an acute set of stressors. About two months later - and this woman was never sick a day in her life and ran 5 miles a day - she suddenly had weird things happen to her hands. And they were COLD. VERY cold. Her cuticles turned whitish and started bleeding. All very odd. Then a few weeks later she came down with full-blown ILD and was hospitalized. Ultimately she was diagnosed with "Overlap Syndrome." That is, she had some of the conditions found in Dermatomyositis, Polymyositis, Anti-Jo-1.......but all her conditions or symptoms were not enough to fall into any one disease. [Talk about frustrating.]
Pred and Imuran over months brought her "back." The Raynaud's had subsided although she never got over the cold hands. Then some months later her hands presented with Raynaud's again and she had trouble breathing. Back to the hospital. Back on Pred and Imuran. And so it went.
I've got several different autoimmune diseases but don't have Raynaud's and have dealt with Sjogren's during my worst flares. For me I've noticed, like my friend, that something "excites" the Sjogren's [or Raynaud's] and not too long later I'm in flare mode.
So why not keep a little journal with dates wheen Raynaud's seems silent, when it kicks up, and what the status of your RA is. You might see a pattern after a while. [Of course, some might say the RA announces the soon arrival of the Raynaud's.....chicken or the egg, which comes first?]
Incidentally, does anyone here have CREST syndrome? Probably not unless you have one of the collagen-related autoimmune diseases.
In short, I think in a lot of cases where autoimmune diseases are present [or dormant or in remission] something goes on with the cytokines that sends the wrong signals and hence the Raynaud's. That's my take on it. If anyone has some good info, I'd be happy to read it.
I'm a big believer is managing stress in your life. I believe it has powers we don't even know about.
Sam12342010-03-04 17:23:07Me, again,
Here are a few good links about Raynaud's. It can be primary or secondary. [I always thought the secondary form was most prevalent - guess I was wrong.] And it can be drug-induced as Snow menitoned earlier.
Primary vs. secondary Raynaud's
Raynaud's occurs in two main types:
- Primary Raynaud's. This is Raynaud's without an underlying disease or associated medical problem that could provoke vasospasm. Also called Raynaud's disease, it's the most common form of the disorder.
- Secondary Raynaud's. Also called Raynaud's phenomenon, this form is caused by an underlying problem. Although secondary Raynaud's is less common than the primary form, it tends to be a more serious disorder. Signs and symptoms of secondary Raynaud's usually first appear at later ages — around 40 — than they do for people with the primary form of Raynaud's.
Causes of secondary Raynaud's include:
- Scleroderma. Raynaud's phenomenon occurs in the majority of people who have scleroderma — a rare disease that leads to hardening and scarring of the skin. Scleroderma, a type of connective tissue disease, results in Raynaud's because the disease reduces blood flow to the extremities.
- Lupus. Raynaud's is also a common problem for people with lupus erythematosus — an autoimmune disease that can affect many parts of your body, including your skin, joints, organs and blood vessels. An autoimmune disease is one in which your immune system attacks healthy tissue.
- Rheumatoid arthritis. Raynaud's may be an initial sign of rheumatoid arthritis — an inflammatory condition causing pain and stiffness in the joints, often including the hands and feet.
- Sjogren's syndrome. Raynaud's phenomenon can also occur in people who have Sjogren's syndrome — an autoimmune disorder that may accompany scleroderma, lupus or rheumatoid arthritis.
- Diseases of the arteries. Raynaud's phenomenon can be associated with various diseases that affect arteries, such as atherosclerosis, which is the gradual buildup of plaques in blood vessels that feed the heart (coronary arteries), or Buerger's disease, a disorder in which the blood vessels of the hands and feet become inflamed. Primary pulmonary hypertension, a type of high blood pressure that affects the arteries of the lungs, can be associated with Raynaud's.
- Carpal tunnel syndrome. The carpal tunnel is a narrow passageway in your wrist that protects a major nerve to your hand. Carpal tunnel syndrome is a condition in which pressure is put on this nerve, producing numbness and pain in the affected hand. The affected hand may become more susceptible to cold temperatures and episodes of Raynaud's.
- Repetitive trauma. Raynaud's can also be caused by repetitive trauma that damages nerves serving blood vessels in the hands and feet. Some people who type or play the piano vigorously or for long periods of time may be susceptible to Raynaud's. Workers who operate vibrating tools can develop a type of Raynaud's phenomenon called vibration-induced white finger.
- Smoking. Smoking constricts blood vessels and is a potential cause of Raynaud's.
- Injuries. Prior injuries to the hands or feet, such as wrist fracture, surgery or frostbite, can lead to Raynaud's phenomenon.
- Certain medications. Some drugs — including beta blockers, which are used to treat high blood pressure; migraine medications that contain ergotamine; medications containing estrogen; certain chemotherapy agents; and drugs that cause blood vessels to narrow, such as some over-the-counter cold medications — have been linked to Raynaud's.
- Chemical exposure. People exposed to vinyl chloride, such as those who work in the plastics industry, may develop an illness similar to scleroderma. Raynaud's can be a part of that illness.
- Other causes. Raynaud's has also been linked to thyroid gland disorders.
My hunch is that the reason 80% have the primary form is because modern science hasn't made a distinct connection to the autoimmune diseases in a lot of cases. Or perhaps some people get Raynaud's and just never progress to full-blown autoimmune disease that can be identified.
So much to learn about medicine.
Sjorgren's is also often worse during the winter due to the dry heat in people's houses. If I could afford it, I would get a humidifer that you install with your air system so it goes through the whole house. Right now, I just use a room size one in the bedroom.
rocckyd2010-03-04 20:13:51Sjorgrens can even happen on it's own without RA or other things. I do not buy the syndrom thing so much.
yes winter is the worst as the little bit of moisture you may have gets zapped by the heat. I keep my heat as low as possible because every little bit helps. I can tell a difference if I keep the heat on 69 or 70 then I feel a bit better. Also damage happens to your glands over time so it tends to get more challenging as time goes by. That is why I gave into the pilocarpin. Really I do fine with it. I just take the two pills a day instead of four.
I am hoping that I can find out information on Mon. from RD as to if the Raynaud's and the Sjogren's can be helped by changing my heart med. I don't know if I stop this med (if it is even the cause) everything will go back to normal or not. I sure hope so... I haven't been this miserable in quite a while. I keep a space heater in the living room, and a blow dryer by my bed so when my fingers (or my toes) start hurting, I can heat them up. This doesn't work if I am out somewhere, in that case, I go to the bathroom and hope they have hot water so I can heat them up in the sink!
It just seems everything, the mental confusion, short term memory, double vision, Raynaud's and horrible dry eye all started or worsened at the same time. I started the daily pred and 2x daily metolprolol at the same time right after surgery. Its just no way to live... I can't drive, can't continually remove myself from company to heat up my hands or use eye drops and my son's are worried I am loosing my mind because I have such an awful case of CRS (can't remember s*#t!). Oh yeah, and let's not forget fibro and RA.
Waddie I am truely sorry you are having all of these problems. I hate CRS. I know I was worse on Plaqunil and that is supposed to help. I quit the fishoil because it seems to make my Sjorgrens worse. Arggh! I really need it for my cholesterol so I will try again later. I guess it could be coinsidence.
The Raynauds maybe I do not have it as bad as others? It seems pretty bad when I get it of course. I keep socks on my feet and carpet or rugs under them also. I also ware gloves and try to avoid situations that will set me off. Sometimes it seems like nothing works but usually I do a good job of keeping warm enough. I have a bunch of sweat suits and my furry air walk boots have kept my toes warm this winter. I am not against waring the boots and gloves in the house if the need arises.
I hope the RD can provide some answers for you on Monday. I wish you the best of luck. Let us know what he has to say.
[QUOTE=waddie]Thanks Milly and Leila, its so frustrating! I mean, just having ONE thing is bad enough! I was kinda hoping with warmer weather, the Reynaud's would be better, but that isn't happening. My hands and feet are awful, either tingling or numb or burning sensation much of the time and my eyes!
[/QUOTE]
okay..... I've had what was DX'd as peripheral neuropathy... burning,numb, tingling hands and fingers.... I don't have the discoloration of reynauds... though my mother had that...... not that I want any other "syndrome" trust me. I am just being curious.
[QUOTE=waddie]I am hoping that I can find out information on Mon. from RD as to if the Raynaud's and the Sjogren's can be helped by changing my heart med. I don't know if I stop this med (if it is even the cause) everything will go back to normal or not. I sure hope so... I haven't been this miserable in quite a while. I keep a space heater in the living room, and a blow dryer by my bed so when my fingers (or my toes) start hurting, I can heat them up. This doesn't work if I am out somewhere, in that case, I go to the bathroom and hope they have hot water so I can heat them up in the sink!
It just seems everything, the mental confusion, short term memory, double vision, Raynaud's and horrible dry eye all started or worsened at the same time. I started the daily pred and 2x daily metolprolol at the same time right after surgery. Its just no way to live... I can't drive, can't continually remove myself from company to heat up my hands or use eye drops and my son's are worried I am loosing my mind because I have such an awful case of CRS (can't remember s*#t!). Oh yeah, and let's not forget fibro and RA.
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oh waddie.. I'm so sorry you are having such a bad time!! I hope that you get some answers and find relief..
everything is so complicated..... and entwined enough to make you crazy!!
good luck....
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