Hi everyone, I was diagnosed only two days ago with RA by my Primary Doc, haven't even seen a rheumatologist yet. I am a 37 year old female who, about 3 weeks ago following a cold/sinus infection, started getting feelings of numbness/tingling/and burning in my hands and feet. I also started with pain in my neck/shoulders, migraines, and have now progressed to weakness in my legs, knees, and feet where I am having trouble even walking and going up and down steps. Bloodtests showed a high RA factor (23.8 on a range of 0-14) and an x-ray of my spine showned the RA in my neck. I am also feeling very ill, almost flu-like. It's awful. Dr. is running more tests this week and I need to schedule an appt. with a rheumatologist asap. I am devastated by this and don't understand how I could go from being fairly fit and active and exercising regularly to having difficulty doing simple tasks in the period of a week or two. I understand that RA can come on suddenly??? So far the only medications I've been given have been Fioricet and Topomax for the migraines. I don't want to take them until I see an RD, I hope to make an appt. this week. Any advice for a newbie? Anyone else out there struggling with similar symptoms? As I said before, I am devastated and terribly worried about the future. I am the primary source of income for my family of 3 - my husband has been suffering with a pretty serious back injury (herniated disk) and he's not able to work full time anymore. This bites. Looking forward to getting to know all of you.
Welcome...sorry to hear you're having such a hard time. My RA also started pretty agressively 6 years ago, though not as severe as you have described. The good news is I feel much better now than I did then...about 90% better so hang in there and don't lose hope. RA meds can be very effective though it can take a frustratingly long time to find the right combo that works for you. Good luck! Saturday's tend to be a bit slow on the board so be patient and I'm sure lots of others will respond.
Alan
Hi fade - welcome to this site (I'm new too and have found it incredibly helpful and friendly). I know how you feel - up until four months ago, I was playing hockey and at the gym 3 times a week. Last week I had to buy an electric toothbrush because it hurts to brush my teeth. Going up and down stairs is an adventure all on its own. I'm still waiting for my first rheumatologist appointment (March 08) - it's very frustrating and at times, very scary. I hope things get better for you soon.Hello and Sorry you had to find us.
Try to keep your eyes looking just alittle ahead of you. As Alan said this is a slow process and can be very disheartening as you wait for results. I too did not want to take a bunch of med before going to RD. I thought if I no longer hurt how can they diagnos me. It could take months just to get in to specialist. There are all kinds of great people here that will gladly answer any question you might ask. Do not be shy. If there are questions you do not want all to see I have not meet anyone here that is bothered by a PM (private message)
Welcome
Jay
Hi there and welcome, ditto to what Jay says. There's lots of people on this site who know lots of stuff and are more than happy to do research to answer questions. No questions considered stupid, its a very scary time for you and know that being angry and sad are normal feelings... possibly for quite a while to come. Would advise that if you are in pain and have medication that you should probably give it a go.Hi and Welcome!
I was severe in the beginning too. You'll get this under control. Mine also started from an infection, in my case a tooth.
Pip
P.S. AC/DC fan?
Hi Fade...yeah, I kinda got slammed out of the blue too. I know that many people do take a long time to get this disease under control. but it doesn't always go that way. I started on methotrexate right after I was diagnosed, that helped but not enough. RD then added Enbrel and I was pretty much back to normal over night. I think that's more the exception rather than the rule, but it can happen. Sure hope it does for you.
Linda
Hi Fade and welcome there are a lot of people that have some great advise about living with this and how to get the most out of a day.
My onset was completely different, as I am genetically pre-disposed, and have suffered for years without a dx. Yep, went in after having a devastating Dec. 06. Good luck with the Rheumy, and hope things get under control quickly.
Hi Fade and welcome.Welcome to the forum FadetoBlack - I'm glad you decided to give us a holler!
I hope you find the perfect treatment plan quickly and easily, so you can get back to doing all the things you love.
Hello and welcome. I hope your find a good Dr. soon. Post or PM us anytime. Hi everyone, thanks for the warm welcome. I have been so uncomfortable and miserable for the past 3 weeks so my heart goes out to anyone suffering with this. Glad to hear many are able to function well despite this condition. Some of the web sites I read were pretty alarming. I wanted to ask a couple things. First, does anyone suffer the burning in their hands? Mine are absolutely horrible - feels like I dipped them in acid and the skin is burning off. I actually hold an ice cold water bottle often to soothe them. The discomfort is much worse at night. Can steroids improve this? I also wanted to know if anyone is suffering hair loss and believe it is due to their RA? I have been suffering hair loss for over 3 years and often felt it was an auto-immune thing (massive shedding and signs of scalp inflammation) yet, I never had a positive ANA. Just wondering of others have this. As a woman, losing my hair has been extremely difficult to cope with. I actually have been wondering how I am going to cope with both of these awful things. Thanks for listening. < =text/>_popupControl();Hi and welcome to the board! Sorry you did have to find us tho.
Well, first of all, it can take a couple of months to get into the rheumy. So many of us and too few of them. Until you can get it with a rheumy, ask your PCP about maybe what is called a pred pack to help alleviate some of the symptoms that you are having from the RA.
I know the future seems a whole lot scary right especially with your hubby being disabled and you are the main income. However, there are wonderful meds out there and wonderful treatments out there that can get you right back on your feet once the right combo of meds is found that works for you. It isn’t like you used to hear in the old days when they couldn’t do anything for anyone with RA except pain meds and NSAIDS. It can take time to find that right combo of meds, but once you do, it’s like WOW…you were never sick in the first place. Until then, do lots of research, ask lots of questions, write down questions you want to ask the rheumy once you get in with him and her, journal your symptoms daily (including how you feel emotionally) so that you can take that with you also to the rheumy so you can show him/her how you progressed since your PCP diagnosed you, and above all, rest and relax when you can. The main thing I really want to stress is that there is no such thing as a stupid question and if you have a question, post it here and write it down to ask your rheumy.
Unfortunately the nature of the beast of Arthur (a name we use for RA) is that one day you are fine and active and the next day you are wondering just how in the heck did I get *this* way? Fatigue is one of the most frustrating and commonly battled things with RA. There are meds for it tho. The fatigue will eventually go away as you get on the right combo of meds. It does take awhile to get rid of, but eventually it will go. Your immune system is all whacked out now and your body is fighting itself so it tends to make ya pretty tired.
This is all very devastating at first and you are left wondering what is my future going to be like. The only thing I can really tell you is that eventually your brain will wrap around this and you will find it easier and easier to deal with. It takes a lot of talking with people who truly understand what you are going through, lots of talking with your spouse, taking things one day at a time, and really just takes time. People who have a chronic illness actually go through the 7 stages of grief. Here is a link for you to look that over and help you get a better understanding that what you are feeling and going through is very normal and all of us have done it. In fact, we bounce around through the stages all the time.
A far as the hair loss goes, yes, that can be something auto immune. I don’t have the greatest of news for on that one (I don’t believe in beating around the bush and hiding things only for someone to find them out later) because one of the meds that is used to treat RA can cause hair loss. I deal with hair loss and so do a few other of the women on the board. You can get your hair styled so that it helps to hide the hair loss and there are shampoos out there to help stop the hair loss. Try adding folic acid supplement (check with your doc to make sure you can take extra folic acid with your other meds) and that should help to slow down that hair loss.
The burning in your hands could be nerve related and you might want to mention that to your PCP and ask a bout a referral to a neurologist because that almost sounds like neuropathy which can be pretty common for us peeps with RA.
You are only a couple of years younger than I am so if you ever need to talk…feel free to shoot me a PM.
Look forward to getting to know you and hearing more from you on the board!
Welcome to the forum and like others have said, sorry you have to beHi and welcome to AI, Fade.....everyone else seemed to fill you in with some really good advice. Hang in there and things will eventually work out.
Take care!
Welcome to the board.
I have hair loss, fatigue, etc., woke up one day with tingly hands and couldn't move. Long story short, Lupus/RA and a couple other fun things tossed in there. The good news, with meds I can walk around again. You have your good days and bad days but with treatment you can get your life back. It may be different, but it's better than the alternative.
Best of luck with your doctor's appt. Try keeping notes of your symptoms, when they started, etc. The more information your rheumy gets the better.
Good luck, and welcome.
I haven't slept well for three nights running with burning hands. My fingers look like sausages and have complete numbness in both hands. Saw my primary Wed and agreed its carpal tunnel and no reason to do the surgery because it isn't from repetitive motions, but the inflammation on the nerve from the disease, and it will only return. I am scheduled to start OT and get splints on Tuesday, but I am going to urgent care at noon if its really open, who trusts a website anymore? The only reason I am in here is because of an overdose of Aleve and I have to get my mind off this pain that is shooting up both arms and my sinus tach heart has gone bonkers. And let's see, need to be back to work to pay for all of this in exactly 27.5 hours. I need a miracle. Best of luck to you, and welcome aboard. CathyThanks so much everyone! Grandmakitties - no worry on the med = hairloss thing. I've had 3 years to research unexplained and sudden female hair loss and learned that every single medicine out there has HL listed as a side effect. My hair is so trashed now, not much could make it worse, and anyway, I wear beautiful wigs to cover it up. Yeah, and those 7 steps of grief, I've already gone through them with losing my hair, so I do understand this, and wow, I feel like I'm going through the HL all over again. Another life-long thing to get my head around. Lorster, my doc prescribed me Topomax also. When I found out burning/numbness/tingling can be one of the side effects, I got scared. My mother is on that and is experiencing that and I am afraid of making my current numbness/tingling worse. What do you mean when you said it made you crazy? I was thinking of asking my regular doctor for predisone, what is a prenisone pack? Does anyone have this RA stuff affecting their internal organs? I also have to see a cardiologist because I had an abnormal stress test? I am seeing a neurologist currently and have a NCT scheduled. Justsaynoemore, I want to tell you to hang in there, but at the moment, I'm having a hard time doing that myself. Hugs to you all.Not everyone's experience is the same which I find amazing...amazing how this disease effects people. So far I have been very fortunate.
My onset of RA was somewhat similar to yours. I did have a flare about 5 years before my diagnosis but it went away and that was that.
Five years later it came back with a vengenance. I saw my PCP who thought I may have RA but wasn't sure. I got myself to an rheumatologist as fast as I could...it took about one month to get an appointment. He didn't immediately put me on RA medication. He did blood work and x-rays. I continued on Naprosyn which did very little really. I told him I did not want to go on prednisone and he agreed with that.
One the next visit he offered me medication options and said review the literature and then let's discuss how you want to proceed. Within a week, I had another appointment. He prescribed Methotrexate and within a short period of time I was about 70 % better. Most of the time now I feel 100% better but I do have my moments.
Before I was diagnosed I was having a difficult time working. Walking up and down stairs was a major task. I could not open the front door in the morning. I barely slept I was so uncomfortable.
Now, work is not an issue at all. I am back to exercising 5-6 days a week. Somtimes I forget I have RA.
Edited to add...One thing that I thing really helps is finding a very good, very responsive rheumaologist. Doesn't mean you will get your RA under control but it sure helps.
Welcome to the board no one wants to be a member of. The good news is, you'll get great support, advice and information here. My disease process was very gradual but my sister got hit like a ton of bricks very suddenly, like you. She's been doing very well for eight years now and gardens, volunteers, sings in a chior, etc. All is not lost. There are wonderful drugs out there now to help you. You just have to be patient while they find the right one(s) and while they kick in. Keep posting and asking questions. We're all in this together.
P.S. Can you ask your PCP to intervene on your behalf to get you in to see an RD sooner? Most of us have had to wait months to get it, but if I was as miserable as you, I'd push for an earlier appointment.
Dear Fadetoblack, I'm so sorry to hear that you are having such a hard time with your health. I hope you are able to find a lot of support and encouragement here. Love and hugs, Julia