So tired of wondering!

1.5 yrs since anticcp @ >250 and I hurt...everywhere tonight..... today....yesterday.

What did I eat? What did I do? Is milk hurting my joints? I had broccoli yesterday, could that be why I hurt today? I'm taking omega 3, maybe green tea?

I bought Probiotics, will it work?........ I sat all day at work, maybe if I walked more? I need to lose weight like my husband insists, then I wont have pain! What if I go vegetarian? Paleo? Stop nightshade plants? Should I tell people how much I stinking hurt some days? Should I suck it up? Can I handle this? Am I handling this? Why aren't I handling this? I am handling it. I am not.

I can't today....ask me tomorrow.

I'm scared it's going to get worse. It will get worse.

I am not ready for medz............I can't be. I'm scared of rheum appt that I can't afford.

What if I don't have RA after all.

What if I do?

What will I do?

15 Replies

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  • I guess this is life with RA.😕 Some days are worse than others. You just have to stay strong. Hang in there.

  • I know exactly how you feel my mind is going constant. Its very hard to cope with. I hope we find some relife soon.

  • Wow, I'm so sorry. Take a deep breath and know for yourself it will get easier. I think the beginning is the scariest. I am 61, have RA, fibromyalgia, osteoarthritis, celiac, thyroid and anemia. It's almost 4 years and some days are better than others. I am on methotrexate, diclifinac, folic acid and Acterma. Enbrel worked for a bit, humera not at all. I also have Tramadol and methocarbamol for really bad days, however I mostly take Tylenol in between. Not really a drug fan so this has been interesting. For me food, weather and stress are big triggers. My best advice is Drs that you can really relate to and just be aware some days are better than others. God Bless!

    PS. As for cost most of the manufacturers will help. Good luck!

  • Thank you guys. This is moving faster than I thought it would and I have kept saying to myself, that its not bad, I can do this. But this last week is bad. Im afraid im just being a baby and its really not bad and its going to get out of control.

    lol, I dont like not being in control. I have/am dealing with a lot in my life and I have been so smug that I can do everything. I have 7 kids homeschooled (mostly grown now, hard part is over, only 4 at home now, only 1 doing school) my husband of 30 yrs is just like me, shut up and suck it up, or in our words "Walk it off, walk it off" lol

    I have 3 bookkeeping jobs right now, but each is only part time, I can usually do all 3 in 2- 12 hr days , much better than driving that distance in 3 or 4 days, I just like to get them over with. I'd rather not work but we need the money . I'm coming up on 55 and menopause was a breeze, no meds needed, I quit a 30yr smoking habit, no medz and lost 30lb too - I dont know why this is all so important to me, that I am capable, but it is.

    So I am so used to doing it all, now I dont know how to cope.

    I thought I could barrel my way through this, I will be fine, but I am very angry right now.

    I'm glad I found this place. Mamadukes, thank you for understanding my rant. Jaclyn it is a mind this isn't it? TerryV, wow, I am so scared of medz, so many side effects. I have purposely not called the rheumatoid clinic back, my insurance sucks, and the clinic wont be up front on how much initial appt is. Why can't they just tell me?

    I am not a crier, but after menopause and now this, the waterworks have been turned on, hate being emotional. I'm a 55 yr old Army Brat, stiff upper lip and all that.

    Food weather and stress, I feel that way too, i can't seem to control any of those 3 things.

    Anyway, thank you guys, you are rock stars for dealing with this a lot longer than I

  • Hi

    May I ask, just to be clear, were you diagnosed 1.5 years ago with the anti CCP test alone? I assume you had a clinical evaluation as well. Were your symptoms mild back then? Did you have any X-rays or MRI's ? And lastly, have you taken any medication at all or offered any yet?

    I was diagnosed in December with an anti CCP test >200. I also had clinical symptoms and an MRI showed early bone erosions while the X-rays were fine. ( erosions show up in MRI's earlier than X-rays ). You may have this all sorted out already and needed only to express your frustrations which I can completley understand but if you're not on any treatment might I suggest a few things?

    Go back to the rheumatologist and ask him/her to tell you if you have erosive RA. If they don't know ask them to do an X-ray on your hands or whatever joint has been bothering you the most. There are many subcategories of RA and if you have anti CCP antibodies along with symptoms then this would indicate that your RA most likely won't stay mild without treatment. I'm sure you already read everything about anti CCP, and RA so I won't repeat what you already know but remind you If you start treatment in the early stages you have a chance at remission and can maybe even reduce your medication later. The doctors where I live treat a high anti CCP pretty aggressively, especially with symptoms of RA and/or imagining results. Actually, they don't mess around at all with patients positive for anti CCP.

    You may do well on MTX or a double or triple DMARD which is much more cost effective than biologics but if you needed those then the US drug companies have a way to get you medication without cost or at least greatly reduced. If you don't have health insurance there's always Medicaid, right? I really don't know how that works.

    I may have completely misunderstood and you're got it all sorted out. At any rate, God bless you for home schooling seven children!

    BTW....you can't walk off RA. It's even hard to shake off how we often act like complete lunatics when it gets the better of us. And we all do.

    Sending you a big hug.

    Lucy

  • Lucy, Very thoughtful and informational reply, thank you.

    Yes, I was diagnosed without a clinical evaluation, just the anti ccp.

    I was told to go to a rheumatologist but it was mild at the time, just stiffness and pain/heat/swelling in hands and I was very not ready for medz. I have read so much on med side effects that I am scared. I asked to be re-tested this past Feb and the anti ccp was the same, everything else is neg, same as the 1st test.

    This last 2 months things have gotten bad fast. Every joint seems to be affected now. And it really hurts, I can barely stand after sitting for too long, walking down stairs is horrible and everything is swelled up, my hands, my knees, my ankles, I feel like I am 100 yrs old. How in the world are people living this way for 30+ years??? I read stories of people who have been fighting this forever and here I am freaking out after 1.5

    I finally asked for a referral to a rheumatologist but they can't tell me how much it will cost and the 1st avail apt is in Nov. , the same month my daughter is getting married, so I would probably end up with Dec appt.

    But I haven't called them back. All my life I have had allergies to so many things and now as an adult I have allergies to 4 classes of antibiotics and to codeine and a few other things. I'm really scared to try new meds so I don't want to go and waste Dr time and our money when I don't want to take the meds yet.....I don't know, So I guess I am just venting.

    Tired of being told by family and friends that aches and pains are normal getting older stuff, and that I need to do this, or that, or this herb, that exercise, lose weight, get over it, they have pain in their knee too and that they probably have what I have too but they just don't have time for it so they ignore their pain and I should do the same.

  • I absolutely understand you. I am just like you in that the only positive test was anti CCP. MY RF was negative, CRP and ESR were both zero which is why I replied to you. All of my symptoms were dismissed as sports injuries so for about two years I was undiagnosed. I wasn't even given a blood test at the time.

    Two years later it got so bad that I went back to the doctors ( a different one). I also didn't want to take any meds but in my opinion the alternative is much worse. Untreated RA is no joke and the longer you wait the less chance you have at controlling it.

    I'm on medication now and feel a lot better and only wish I was diagnosed earlier and started treatment years ago. The side effects for me are not nearly as bad as what I've read.

    I really encourage you to think about going back. In my opinion, 4 months is too long of a wait. If you go to your GP they can probably sort out getting you in to see a rheumatologist earlier make sure you tell him you had a high anti CCP and that its all been getting a lot worse.

    It's totally up to you but I was in the same boat and now I'm better but still have to tweak the meds to find one that really works for me.

    I wish you the best whatever you decide!

  • Lucy, You have said everything i was going to say. I was also afraid of the meds.I have been on a lot of meds , injections and finally am on an actemra infusion. You can't ignore this disease. It can eventually affect your organs too!Maybe you should try to get in to a different Rheumatoligist. Have your GP try and get you in quicker. I wish you the best of luck in getting help.

  • OMG...I can sooo relate. I also am only CCP positive and the symptoms got worse really fast. I need to start methotrexate, have it already, but I'm so afraid of taking it. This disease does make you feel crazy. I also was so active and always able to push through things. This is just not like that. I also read how horrible other people are and it's just so scary. And no one understands. If we were told that we had any other disease, people would be concerned and helpful, with this, no one cares. I'm just so sad.

  • Please don't be afraid of meds. It can be life changing to find something that works, when suddenly you wake up and the pain that has been constant for years has significantly decreased! On meds I have actually had some completely pain free days for the first time in probably 15 years! It is very trial and error to find what works. I tried many natural remedies, yoga, diet etc before. While all helped some, nothing really changed my quality of life until I went on meds.

  • Weather and stress can effect you a lot! I have been diagnosed with RA for 4 years now. The weather this past week has been awful for my RA and the stress i have been having hasn't helped either! I have been hurting alot , I spent one day in bed feeling aweful hurting all over! I also have Fibro and osteoarthritis.They seemed to have ganged up on me this week!

  • Be gentle with yourself. The pain sucks. Hopefully your visit will help. This so frustrating pain is so ugly. I finally started with Humira and after three day woke up with no pain. I might be one lucky person. I have no money and the company paid for the drugs. There is always the word called HOPE

  • I too had high Sedimentation rate, high C Reactive Protein, high RF factor, and negative Anti-ccp. I am on Imuran a Dard and Actemra weekly at home injections. I didn't think it was helping but I had to stop due to an infection and boy did my pain increase whole I was off my Actemra. It made me realize I really do need the medication. Tried Humara and Enbrel didn't work, then moved to Actemra every other week, then to weekly and now I think it is working cause when I had to stop I really felt the pain. Best of luck. Dont stop fighting

  • After reading all the messages above, Lucy11 has given very good information for RA patients. I was diagnosed with RA in Jun 2014 and I am now in remission. When I was diagnosed by the GP of the disease, I had no idea what it was all about. The rheumatologist attended to me but I was sent for X-ray and blood test and scheduled to see her again in 23 July 2014. Though I was in great pain but I was not given any medication except the pain killer.

    While waiting to see her again, I went online to get more information about the disease. I was so worried after knowing the problem and the medication that came along. I prepared a list of questions before I see the rheumatologist and I was given all the answers I wanted.

    One cannot wait and delay the treatment because the disease will attack the tissues around our joints and eventually our joints will be eroded and the the erosion is not reversible.

    We can worry about the side effects of the medication but it gives us more benefits than the side effects. Not everyone will have the side effects hence your doctor will need to monitor you closely.

    To avoid any complication and side effects, no supplement should be taken before you consult your doctor. Plant-based diet may help in reduce the inflammation but it will not reverse the RA sickness, we need to be treated immediately.

    Yoga and other low impact exercises will help to keep our joints mobile but they will not stop the progression of the disease that erode our joints.

    I am now in remission and my doctor said that she will keep me under the same amount of medication for another half a year to ensure the disease activities are continue to be low and no flare up to cause any damage to my joints.

    I was very lucky that I was treated early. My RF was/is negative, CRP was 177 and ESR was 98, CCP was/is negative. In my last blood test on 19 Apr, my CRP was below 1 and ESR was 9. I keep an excel record of my blood test from day one and that helps me to monitor my own condition too. I always raise question base on my blood test result when I meet up with my doctor.

    The important thing is one being diagnosed of RA, he or she should go to see the rheumatologist immediately. Further test must be done to confirm your situation before the doctor will decide what medication to be given to you. Do not take it too easy and trust yourself that you will be fine again one day when you follow the instruction given by the professional closely.

    I was a very healthy person who went for yoga classes 3 to 4 times a week and went hiking during weekend. There was no symptom before the attack. I hardly took any medical leave but I just collapsed in end Jun 2014 after I came back from the trip in Japan.

  • I can relat to everything your saying I was diagnosed in March with seronegitive but my symptoms started after having my 2yrold but they have started to go crazy every joint imaginable is hurting swollen hard to move im 33 yr old by the way im supposed to be in the prime of my life but instead I can barley get off the couch and cook. I can't get into rhumy until august which isn't far now my but I'm afraid of the damage it has already caused. Im scarred of the meds too hunny but we need to think about it do we want to be able to live our lives normal or do we want to be stuck like this. Oh I cry now everyday and im not a crier either. If you want to talk ever im here.

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