Hello,
I am going through a few torturing weeks waiting to get to an appt. with a rheumatologist who would confirm or disconfirm an RA diagnosis.
In the past few months I have experienced stiffness in joints (kneews, fingers) and some very vague pain once in a while. Yes, it is symetrical, not at all unbearable, it goes away pretty quick in the morning - but I don't think completely. Overall, I am still perfectly functional but this thing began to bother me.
So I went to my GP for an annual, mentioned problem to him, he ran tests and the RF factor came back a 22. He says he does not believe I have RA even if the RF was slightly out of range.
I should mention that I have a 2 yo who is getting heavier by the day and whom I end up carrying in my arms more often than I should. I have also put on about 30 pounds in the past few years, after I had my son. My GP says the RF factor and my complaints may be due to the fact that I am a tad overweight (I did not used to be) and because I am completely sedentary right now (full-time office job, long commute, kid at home, need to cook bc/ I hate ready-made stuff, no time left for any sort of exercise).
However,my GP said that if I really want to see a specialist, I can go see one, just to stay on the safe side - though again, he says it is not RA.
What would be your prognosis/opinions? I am scheduled to see the rheumatologist in 3 weeks but until then I will remain a nervous wreck. Any opinion would be welcome...and Gosh, what would I give for some reassurance beyond that of my GP.
Thank you so, so much.
Siracusa, I think my RA number was 25. They said that wasnt very high. However my first indicatons of RA was waking up so stiff and it lasted for awhile and then if I rested for a half hour after I got up from sitting down I was sore in my joints all over again.
I see.
What is the life expectancy of men/women with RA? If it is RA, should I simply expect to die younger than others?
When someone is diagnosed with a milder/less advanced form (which I suspect mine would be), does this type of RA progress to worse forms?
Thanks so much again.
siracusa, I would get checked by a rheumatologist and have x-rays, particularly of your hands. My bloodwork was fine, but my x-rays showed damage. My symptoms at the beginning were the same as yours. My GP told me that I did not have RA, but I chose to go to a rheumatologist anyhow, to make sure. I'm glad I did.
I have seen different reports on life expectancy with RA, but can't recall specifics. I honestly try to stay away from those. No, you should not simply expect to die younger than others. You should expect to live a long, healthy, pain-free life and do everything in your power to take care of your body. Address the weight issue, find a way to incorporate exercise into your life, attend all doctor's appts, research med options if you have RA and take your meds. Keep a positive attitude and count your blessings every day. I remind myself constantly that there are many paralyzed, bedriddend, etc that are much worse off, so I count whatever blessings I have.
Please dont worry about your life expectancy. Today is so different than years ago. There are some great meds out there.Hi Siracusa & welcome to AI.
I think making the appoinment with the RD was a good choice. You could be showing signs of early RA but then again it could be a number of things. Do you have a family history of RA or other chronic illnesses? Did your doctor check your sed rate, thyroid, test for lyme disease etc... or just check your RA factor?
It is very frightening when you know something is wrong with your body but don't know what it is. That being said, try not to stress yourself out too much before you're appointment as there's nothing you can do at this point. If it does turn out to be RA, they have come a long way and there are several options these days.
As far as life expectancy...that's not an easy question to answer. Yes there are people that have died from complications of RA but then again there are people that live long lives with controlled RA too.
RA affects everyone differently so for some they may live their life with mild RA, some that go from mild to severe, some that go into complete remission and everything in between. It's a crazy disease and there is no one that can guess what the outcome is going to be. Living with RA, you never know what the next day will bring. You may be feeling great and walking around one day and the next bed ridden, unable to walk or move your arms etc...
Good luck at your appointment and let us know how you do. If there's anything we can help you with in the meantime....we're here.
Peace & Love...Neasy
Hi siracusa, Welcome if you are new to this forum. You are on the right track!, my GP never like anything I did with my RA doc. He was against me taking mtx, and all that, but ya know what, I just kept taking it as my Rheumy convinced me the joint damage would be awful, and RA also attacks your inner organs. We need to be treated. It sounds like you have been researching this disease and a shorter life expectancy is one of the factors, but like the others, I don't worry about 'it'. Who knows we could be hit by a car tomorrow?! as with everyone else, no one knows. Your symptoms are suspect, and I'm glad you'll be seeing an RA Doc in 3 weeks. Perhaps you could call an get on a 'waiting list' and be prepared to go in if called. this isn't an easy process and I've been sorting out a bad flare for the last 6 months, so I understand how you feel. The doc will give you some more info, and let you know how really important it is to treat this disease. Good luck, LyndaHi Siracusa,
I too am waiting for a confirmed diagnosis for PA- First I had it, then the RD said I didn't then a foot surgeon said I did and to be honest, reading the symptoms all the guys on this board have I know I do have it.
I too did some internet trawling and discovered that I may have a shorter life expactancy than someone without this condition, with a three year old myself and a lot of living to do I nearly dropped dead on the spot (which I guess would've proved that theory right)
However, new treatments are always a possibility and who knows what is around the corner?- could be a new wonder drug, could be a bus. I know how hard it is to fit anything in with a small person and am in no position to lecture about excercise but at the weekend I took her swimming (thanks to the advice I got here) and was amazed how great I felt in the water compared to dry land (I'm probably a whale) Admittedly, because she can't swim I didn't work up much of a sweat but she had a fantastic time and for once her mummy could actually do an activity with her.
I am signing her up for swimming lessons so that one day soon I will be able to do a few lengths of the pool without paying for a sitter!Learn all you can, take advice from fellow sufferers, listen to your body and do everything in YOUR power to live a long, healthy and happy life.
Wishing you all the very best
Sam
My GP did X rays of hands and said it looked perfectly fine.
He ran other tests too (not just the RF) and said all came back perfect, except the RF which was only slightly elevated (RF=22). That's all. He said I should not be worried and that I am in good health, only that I need to start exercising.
Yes, I am certainly still going to see the rheumatologist. I am the panicky, obsessive, slightly hypchondriac type - unfortunately. What's worse is that this is depressing me to no end. Not knowing, the possibiltiy of having it make me mentally non-functional. I think about it and worry about it all the time.
3 weeks of this and I will be kicked out of work.
All of my grandparents lived really long lives (my granfather will celebarate 100 next year) and I think I have been living on this really stupid impression that I am somehow meant to have a huge life span myself.
This came like a hard brick. Thank you again for your time and advice...
One more thing. I might be pregnant - will find out in two days when I can test. If I have RA, would it be insane to have the child?
Hello, and welcome. Lots of folks in my family have RA. They have all lived very long lives w/ RA, my grandma lived into her late 80's. I had lower #'s for RA as well, but the other #'s like size of blood cells and other inflamation in the body led my doc to start me on the drug path. The #'s have come down and I do feel better. I just question every single thing the doc says and gives me. Coming here has been invaluable learning about this disease and all the other related ones as well. The people here are great about pulling you back, so to speak when you get to the point where you can't deal. Promise, you'll get better. There's a wealth of information on this website. Check it out. Hope you feel better soon.
Sincerely, Monk
[QUOTE=Monk320]Hello, and welcome. Lots of folks in my family have RA. They have all lived very long lives w/ RA, my grandma lived into her late 80's. I had lower #'s for RA as well, but the other #'s like size of blood cells and other inflamation in the body led my doc to start me on the drug path. The #'s have come down and I do feel better. I just question every single thing the doc says and gives me. Coming here has been invaluable learning about this disease and all the other related ones as well. The people here are great about pulling you back, so to speak when you get to the point where you can't deal. Promise, you'll get better. There's a wealth of information on this website. Check it out. Hope you feel better soon.
Sincerely, Monk
[/QUOTE]
Speaking of grandmother, I know that my grandmother (who lived to be 90 yo) WAS complaining about some kind of arhtritis, but I don't know if it was RA or another type simply due to age. I do not remember her saying that she had any trouble in her youth with such a thing.
Towards the end of her life, her fingers were a bit deviated towards the pinky and they seemed stiff, indeed.
So I think that yes, there was something in my family. But this was never really debilitating for her. She did tons of housework (Gosh, her cooking - what an amazing thing that was!!! ...) and everything in between until her very last years of life.
She passed away because of some form of old age leukemia - no one mentioned anything about her arthritis being the reason. But then again, she reached 90 yo and she had a good quality of life until 2-3 years before she passed away.
So...I don't know. My half-aunt (mother's step sister, they had the mother in common, not the father) also seems to have some sort of stiffness in fingers. They always seem stiff and a bit in a "claw" position. She says it is "rheumatism". But this is something else than RA and she doesn't give it a thought on a regualr basis. It doesn't prevent her from living a 100% normal life.
And oh, my mom has diabetes (most surely stress-induced).
That's my family history. Everyone else going strong, my grandfather being the major miracle of the family. At almost 100 yo he still jumps on and off public transportation (the uncomfortable, Eastern European kind) and argues over politics with the sharpest mind I've ever seen.
So again, somehow I was supposed to live to be 130...
Siracusa, be patient and it will all work out. It took three years to diagnose me and a change in RD's. One would only look at RA, and clearly my levels were not ever high enough to be RA, and he told me to come back when I was really sick. I found another RD a ways away from my home, and he is wonderful. He did more tests, and found I had PA, which is treated just like RA. Sometimes it is not a quick answer, but follow what the RD is telling you. Staying active is a great thing, but there will be days that fixing lunch and tidying the kitchen is all you can do. It is a learning process, and I am still learning. I also know several young women that have carried children to full term with RA. Just be honest about all your symptoms and take a deep breath. This is a process and a journey, not a sprint!!!
Siracusa
as a friend of mine once said...step away from the computer. You may not even have RA and you already have yourself dying at a young age.
There are many many possible causes of an elevated rheumatoid factor, including for no reason whatsoever. Your symptoms also fit many profiles inclusing hypothyroidism. So do yourself a favor and stop researching until after you see the rheumatologist. right now all you are doing is scaring yourself which is not helping the situation at all.
In the meantime keep a daily symptom diary include your dai;y activites and food intake as well as anything that is going on physically-even if it seems unrelated. Describe where the pain is, how it feels (use the 1-10 scale), how long it lasts.
Even if you have RA, things will be ok. There is life after RA. And those life expectancy stats do not reflect people diagnosed and treated in the biologic era. Those meds haven't been around long enough to have the numbers
Hello and welcome! You have been given some very good advice, not much I can add to it. As a note, in general, from the reading and research I have done, I have read that people with Ra die an average of 5 years younger but again, its just a best guess as ra is so individual.I forgot to mention I am 34.
Thank you for everyone's advice, I really appreciate it.
Hi, how exciting tht you may have a baby! What a wonderful addition to this RA board, a new baby to think about! We can all use a different perspective, please oh please, let us know!! LyndaI thought RA and rheumatism were the same thing.
Gogo: I think rheumatism can refer to any of the rheumatic or rheumatoid diseases (all autoimmunse diseases basically).
~K
Hi siracusa and welcome to the board.
First of all....take a big deep breath and relax.
As far as the possibility of being pregnant and possibly having RA...many many women with RA that become pregnant actually go into remission. That is the RA is under control. After the baby is born and you do have a diagnosis of RA is when you can really start hitting it fast and hard with whatever treatment option you decide you want to do.
I know waiting is the hardest thing to do...but don't jump to conclusions and make yourself sick with worry over this. Many of us lead incredibly wonderful and productive lives with RA. There are many here with small children that can give you wonderful tips and hints and how to care for small children when you have RA. This really is not a death sentence or the end of the world. Altho right now it really seems like it. There are huge advancements in meds and therapies out there for RA. And there are even more advancements on the horizon.
I was 26 when I was diagnosed and I am 39 now. Altho there have been some changes I have had to make changes in my lifestyle concerning how much physical activity I do...my life is still pretty good.
Another new baby around here would be so great!!
Hi and welcome. I've had mild RA for close to 30 years. The doctor tells me that the methotrexate stopped the progression and is the reason I have not become worse. This may or may not be true but I've had a wonderful 30 years raising 2 children with not too much trouble. Even if you have RA, you might not ever become worse than you are right now. Finding out for sure is the important thing. You wouldn't want to just let it continue to become more painful and actually let you joints be damaged by the desease. Good luck.Oh, Gramma, I was going to tell her about the remission!
But I think I disagree about the research. Yes, you're freaking yourself out now, but if you can step back, save to favorites' any studies or info you find intriguing, and make a detailed journal of what you are feeling and experiencing (pain wise) - you will be much better prepared than most people seeing rheumy's for the first time. Mind you, he'll probably only pull more blood work and tests, but he can answer a lot of your basic questions right off the bat.
And I saw those same stats when I was first diagnosed. Who said it almost caused a heart attack? I sooooo argee. I just decided right there and then 'I wasn't going!' Like you, I had a young daughter and too much to live for. If it is RA (and right now we don't know that) there are a ton of things to do to help yourself heal and to help you live a healthier life.
Pip
LOL Pip. Next time it's your turn.
The list. Did anyone mention make a list of questions and take it in with you to the doc? That way you do not forget anything. I know someone said keep a journal about symptoms etc. That is a fantastic idea.
Just wanted to send my best regards and to support all the excellent advice you've been given here. Worry is not good for you or that baby. So...wait and see what happens at the doctor's office.
My RA started about 2 years after a miscarriage. My youngest was 7 and my eldest 17....so we were rather surprised to be pregnant again. But still delighted....only reason I mentioned the miscarriage is that pregnancy seems to lessen the effects of RA. So if you're bound to have it, the pregnancy takes the edge off the symptoms.
My own mother with RA started in her 30s and felt relief only while pregnant. They didn't have the good meds in those days.
Hopefully your news will be good. I also had a low positive RF (32) but for most of the labs, it came out negative. My doctor treats the disease aggressively and I am doing pretty darned good.
good luck to you!
I am not going to be of much help since I am waiting on being tested for RA (I am waiting until I have to have my other lab work before my next doctor appointment so I can have it done all at once) but I wanted you to know that you are not alone. I have basically the same symptoms as you have. I have pain and stiffness, mostly in the morning, in my back, my neck, both feet, both elbows, both knees and I think, both hips. It has been diagnosed through x rays, but not the blood tests. I am only on Relafin and am not experiencing any life changing symptoms either, other than I am very frustrated that my feet hurt all the time, I am miserable when my back or neck flare and I feel like my arms are getting weaker. Let us know what you find out.Thank you so much everyone for your encouragements.
If my X-rays were good, is there still a chance that I may have the RA?
I understood that damage to the joints - visible with X-rays - occurs very early, usually before outside symtpoms appear.
Is this correct?
Hi Syracuse...I'm new here myself and recently diagnosed. I'm glad you found this board, I can't tell you how much help I've gotten from these quality people!!! If it turns out that you do have RA, it's not the worst thing that can happen. You'll just make whatever adjustments are required and go on from there. Just like any other thing. I can tell you with 100% honesty that my life is every bit as happy, worthwhile and I laugh just as much and smile too and do everthing I ever could, just some things I can't do with the same gusto. And when I say that, I mostly mean that I have to use an elliptical machine instead of running. Hardly a nightmare. Please don't be discouraged for too long. Things always work out. They always do.
It would be unlikely in early RA to find significan joint damage.Relax.
Go see the RD, but also take a walk every day. Dont go far and dont go fast but get out of the house and away from the computer. walk around the block.. just walk for 20 minutes.
You want to live longer? Fasten your seatbelt, lose weight and DONT smoke... (not saying you smoke.. I dont know)
I'm 54 have moderate to severe RA, cardiomyopathy and asthma. I'm raising 2 kids one was 5 in may and the baby is 21 month old.
Life with or without RA is exactly what you make it. its all about attitude. My motto is Life is GOOD, and ya know..it pretty much is..
Hi, I'm writing again, because I wanted to tell you that 'getting RA' wasn't great, but I went on with my life....I played on a ladies tennis team for 10 years (took my pills and kept hitting the ball!!) My partner had a hip replacement, but came back and we kept playing, wining our 'local championship! I also played golf with my husband and son and walked the beach every afternoon. So, RA didn't slow me down and it won't stop you from doing what you want to do. I udnerstand that you are scared (the unknown is always scary), but trust me and everyone who has written you will do okay. It is just a bump in the road. LyndaHi again Siracusa,
Re the x-rays- all the joints that have recently started giving me trouble are perfectly normal on x-ray Only the long standing (4yr) joint shows clear damage.
And finally on the life expectancy thing- my ex-mother in law is 80, has RA and I know she will live forever
Sam
I remember my first ever visit to the rheumatologist. He examined my joints, took about 6 tubes of blood, xrays and told me to come back in two weeks. During those two weeks I was glued dto the internet finding out every possible thing that matched my symptoms. I was terrified. I just remember those other diseases running through my head, sitting in my car at a red light on my way to his office to hear my final diagnosis, tears in my eyes, heart pounding thikning of my kids and thinking to myself "God, I HOPE it's only RA that I have". My point being, yes, this is a disease that we will have forever but there's always someone who's in a worse predicament than we are. Our drugs are so much better than what our grandparents had avaialable and are getting better every day. Chin up. Good luck.I am curious about one thing.
There is a general school of thought out there (quite strong and quite solidly argued to my humble ears), which lies outside of conventional medicine and that believes any disease comes from some underlying cause having to do with a messed-up immune system. The messed-up immune system results from an overall bad lifestlye, practically inevitable in the modern world, unless you make major efforts to stay out of it, which the VAST, VAST majority of people do not.
That includes what many call "modern food" (some say ANYTHING COOKED and PROCESSED is plain bad), sedentarism, chemicals of all sorts. You know, the whole 9 yards.
This school of thought argues that arthritis CAN disapper when one reverts to a completely raw food lifestyle, exercise, sleep, drink pure water, get sun light as opposed to "office rat" air all day long, etc. All in all, pure, healthful living - which in fact requires monstruous efforts in our modern society, especially when you don't have the resources to finance one on a day to day basis.
Signs that have been alerting me for years that my immune system is NOT doing well include Candida overgrowth in the intestinal tract, year-round allergies/mucous/post-nasal drip and general fatigue and muscle pain, sometimes verging on depression - which I have always blamed on home-sickness (I am not a US citizen).
Final Question:
Did anyone here try to RADICALLY (and I DO mean RADICALLY) alter their regular, "normal", "modern folk" lifestyle in order to GET RID of this thing as opposed to just accepting what your average conventional doctor says, e.g - there's no cure for arthritis, just take medication?
Thank you for all your help.
Honey -
Yes, RA has been around for at least 100,000 years. There are human fossil remains that show joint damage from the disease in North America.
However - looking more into that, one thing I found in research was that they had no recorded cases of RA in the Europe until the late 1600's if memeory serves me right. They had AS only.
It's something we sent back to them. After the new world was discovered and intercontinental travel (such as it was) became possible.
Pip
Siracusa -
KoKo is adamant that he remitted his RA with mushrooms. Linghi? I have a freind in N Zealand who totally remitted her PRA with diet and natural minerals and antimicrobials. It can be done but it takes a lot and you have to be totally committed. There are a ton of studies on "leaky gut" and with a history of candida - I'd say you can pretty much guarantee how your immune system got out of whack. (Mine too).
GoGo and I are AP-ers. We believe this whole thing started with an infection and the body just couldn't overcome it. If you want more info on it check out www.roadback.org.
Personally, I'm using the ABX to kill off the original infection and am moving to 'healing the gut' so nothing else get's out and starts this all over again for me.
Pip
To Pip: Waow - and thanks.To all those worried about a shorter life expectancy due to RA please stop. I have read that RA shortens your life by 4 years, (smoking by 7 to put it in perspective). But we die of heart disease, just like the rest of America.
So stop smoking, keep your weight down, limit the saturated and hydrogenated fat, keep blood pressure and cholestoral under control, and try to exercise 30 minutes every day. (My docs say the exercise can be 6 segments of 5 minutes each). Adequate sleep and less stress may be useful too.
So read up on the healthy heart rules , have yourself checked out by your regular dr, and take ACTION on any neg heart related findings.
Marian, I agree about the shortened life expectancy worries. I actually left this board the first time I stumbled upon it (2 years ago) because of a post about RA and shortened life expectancy. (Might have been another board).There was a poster (no longer posts on this board) who posted numerous times about how those with RA have a decreased life expectancy. My point was, none of us know when we will die, so how do we know what to subtact 4 (or 7) years FROM? What is the point of a depressing, negative post about us dying earlier? I could never find any purpose whatsoever in someone posting such statistics. She seemed to thrive on the statistics though and almost seemed happy she had something that could shorten her life expectancy. I stopped coming to the board that very day and didn't return for over a year. I decided I'd go out and live my life, expecting to live a long and healthy life, while she sat at the computer researching how soon she was going to die. I remember she was significantly overweight and wondered if she would just get off the computer chair and work on losing weight, she could gain back those 4 (or 7) years she felt she was being robbed of.