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Newly diagnosed just need to vent
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Tammy62 posted:
This all started two and a half months ago. It literally came on overnight. My husband and I went to dinner about an hour away from home and my hands started hurting. By the time I got home I was in tears. I thought it was a virus or something took some pain med I had left over from a surgery and thought that would be the end of it. I couldn't get out of bed the next two days. All of my joints were painful and my hands and feet were burning and red. I still just thought ok this will pass I had a dr appt later that week. By the time I went to dr petechiae had appeared on both feet. She immediately said I am going to check for RA but I reminded her she had checked for it previously and it was negative. She felt something definitely going on so referred to rheumatologist. That appt was November 3. She ran more tests and said RA. Said stop taking taking aleve and gave me two weeks of prednisone. I felt better after three days. Still sore but just a little pain. She gave me info about MTX and hydroxchloroquine and told me to decide which to start I have been off the prednisone for two weeks now and the pain is worse than ever. My fingers are curling. I am so exhausted I can hardly make it through the day and then I can't sleep because I hurt so bad. I am sorry to whine so much. I just needed to vent somewhere and saw this group. I keep,thinking she will tell me when I go back it isn't RA. But then what do I do? I don't even know which medicine is the best choice for me if it really is RA. I am usually a very positive person but the last few days are getting to me.
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blugixxer6 responded:
Hello, your story sounds alot like mine which started about 7 months ago I am currently on the MTX injection, prednisone,plaquinel, folic acid and a vitamin d supplement.I know how you are feeling I have been dealing with the same problems in my hands and feet also.the meds I'm taking even with the harsh side affects they have are giving me some relief but I still have rough days to deal with but things are improving for me.it has been very hard on me to adjust to this as I am not used to asking for or needing much help with anything.I get frustrated and need to vent myself at times and most people I know including my own family members don't really understand what we are going through so try to stay as positive as you can, vent when you need to and I think a little whining at times is ok too.
 
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xperky responded:
Wow, your symptoms came on fast and strong. I'm glad you will starting some kind of treatment soon.
 
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Maxwell1965 responded:
Tammy,

Pretty much the same thing happened to me. I started feeling exrteme pain one body part at a time, about once a week. My primary doc thought I had torn both of my rotator cuffs in my shoulders, but that didn't explain the pain in my toes, ankles, knees, elbows, wrists, and fingers. I was a frickin mess.

It took me about a month to get the refferal to an RA doc, but once I was in and got diagnosed, things started getting better pain wise. He put me on predinose and immediatley I felt better. I was on it I think for about five weeks, then came the methotrexate, low dose at first and not problems. The doc upped my dose and then I started getting the side effects: the naseau, flu like symptoms, and now my eyes are red and burning like hell, and let's not forget the fatigue.

Now I'm on Humira with the methx.

It sounds like you weren't on the predinose long enough. But with the methx, you should start feeling better.

The thing with RA is that you have to sleep, and you have to allow yourself the sleep without feeling guilty about it. You need at least 10, preferebly 12 hours of sleep per day when you're feeling bad. The other night, I slept 13 hours. It sucks, but you have to do it.

And of course my wife has been really great about this, taking care of me and stuff. That's an important part. Your family needs to understand that y ou're sick everyday and that you need to sleep.
 
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xperky replied to Maxwell1965's response:
I agree about needing all the sleep you can get. I love to go up to bed, especially with my heated mattress pad on in the winter. If pain keeps me up, I'll need even more hours in bed.
 
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Emmilylynn responded:
I understand the stress of it all. Its hard. I just vented too because I seen this group. Its a horrible thing and I feel sorry for everyone who has it because I know the pain to an extent. Everyone has a different pain and a different pain tolerance. I can never sleep. Going on about 2 days now without sleep.
 
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CrystalLarel responded:
RA just sucks. There is no other way to say it (well I'm sure there are but that's just not how I talk). I have good days and bad days not just with pain a inflammation but with my mood. I seem to cope better on some days than others. It's normal, sometimes it's nice to know it's normal. It's so hard to have a disease with so many question marks on top of the pain. What meds should I take, why don't they work, what are the side affects, long term damage, what are other options? Why do I hurt more some days than others? What is it that makes me hurt?? What makes me feel better? I could literally go on and on. The important thing is to cope. Rely on those who love you because you will carry them in other ways in the future, that's love. My husband is a saint, we have a 16 month old baby and he woke up with her because I don't take pain meds at night, it hurt too much. I'm missing out on motherhood...I didn't visualize parenthood like this. I didn't visualize a lot of my life like this. I hate it when people say to count your blessings because sometimes I just don't want to. Most days I'm good about being positive, other times I have one heck of a pity party. I allow myself to feel down, I name my frustration (mad, scared, frustrated, etc). I've found that giving my emotional pain a name takes away its power. The last thing I need is to give my emotions control. I am in control of my emotions if I cannot always be in control of my pain level or inflammation. I have found these tips to be helpful for my emotional health. I'm also a fan of counseling, some people don't want to go because of the stigma associated with therapy but I've been and I swear by it. It's nice to talk to someone who doesn't pity you and can give you another point of view. I hope I've given you at least one helpful tidbit to give you strength for the emotional bad days. Remember, you are not alone, others are going through the physical and emotional journey you are on. Do something for your self! Watch that chick flick, get a mani/pedi, schedule that massage, go for coffee with a girlfriend, bake those cookies, whatever you do for YOU.

Take Care, Crystal
 
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HanDiana responded:
Tammy,

I'm sorry to hear that your RA is hitting you so fast and strong. If your fingers are starting to curl, you need to pay good attention to this. Once deformity is formed, you cannot undo the damages that are done (Not trying to scare you but just want to put picture in perspective).

For me, I was dx two years ago and I'd been there before. I lost my full range of motion on both my wrists. Was too slow to get diagnosed and hence, too slow to take action to stop the progress. Furthermore, I was kinda naive back then, not knowing how to seek help, opinions, experiences or even join RA support group like this.

From my personal point of view, if you like to get well and halt the progression of RA, you will first need to understand that RA is a multi-faceted condition, i.e. there are actually many causes of RA. With this understanding, you are best able to determine which course of action to follow, ie will you be willing to go for the alternative CAM route? I've just recently set up my personal blog that features my journey of reversing RA through CAM approaches. If you are interested. You may wish to explore my blog at http://www.myradiary.com/170/the-many-causes-of-rheumatoid-arthritis-explored .

For drug alternative, you may like to explore into low dose naltrexone (LDN) (http://www.myradiary.com/570/low-dose-naltrexone-ldn-a-better-drug-for-rheumatoid-arthri tis). This drug is not mainstream for treating RA, but some people are seeing good progress with it without side effects of typical rheumatoid drugs. As most rheumy does not prescribe this drug, you may need to approach doctor who will.

Other medicinal alternatives include: Dr Brown's antibiotic protocol eg Minocin (based on premise that RA is caused by mycoplasma), Metronidazole & Allupurinol (based on premise that RA is caused by protozoa/amoeba), thunder god vine (TCM approach of RA treatment) are some for you to explore, research and consider.


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