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lilac7
Regular Member


Date Joined Nov 2013
Total Posts : 230
   Posted 8/4/2016 12:29 PM (GMT -6)   
So I've posted before that my mom has arthritis. I've been having some symptoms like occasional pain in arms and cracking sound from my thumb and knees. The only test i've been through were uric acid and RA factor, twice. The uric acid was normal and RA came negative, though I'm not sure we can trust this. How has been your experience with this test?

So from last couple of weeks, some new symptoms have started. Like, firstly my knees, legs, arms start staying numb for hours, especially while laying down. I naturally went to see a doctor and they tested me for uric acid and RA as i have mentioned. The numbness got better in few days, but now my knees have started aching and it's getting worse with movement. At first it was only at night while laying down and would get better if i would sit up. but now today i had to use stairs, three times, and the pain isn't leaving me alone now. it isn't severe, but it's constant and distracting. my elbow also hurts from time to time. so i'm wondering if this can be arthritis. and since the RA test comes negative, but are there any other test i should be looking for? and can there be some reasons other than arthritis for this pain?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/4/2016 12:37 PM (GMT -6)   
My RA factor was 14. So the doctor xrayed my hands and figured I was sero-negative. Blood tests said no but the xrays were definitive.

Ask your doctor to xray your hands. It usually shows up there first.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Don_D
Veteran Member


Date Joined May 2013
Total Posts : 548
   Posted 8/4/2016 12:41 PM (GMT -6)   
Well, I know what you mean about feeling anxious about all this especially with your test results coming back negative. My RA factor was always positive but I know many people are diagnosed with RA who test negatively for it. I don't know what to think about this personally. It seems like this test is pretty spotty but then you have guys like me so who knows.

There is another test that my Doctor uses to monitor RA disease activity called a Vectra DA test but I don't know if this is something that your Doctor would even consider but it might be worth asking about?

With the numbness I would think nerve type issues. I wonder if Fiber mialgia (sp?) is something that they might look at? My MIL has been diagnosed and treated for it for a long time and I know that she takes an RX for her nerves. I really don't know a lot about it though so I should probably defer to someone in the forum about that.

I hope that you feel better and that your Doctor is wise in your journey with this. -Don

lilac7
Regular Member


Date Joined Nov 2013
Total Posts : 230
   Posted 8/5/2016 9:41 AM (GMT -6)   
i have to see the doctor after a couple of days and will discuss this with him. i can't trust the blood tests now so x ray seems to be crucial.

celebrate life
Veteran Member


Date Joined Dec 2014
Total Posts : 2066
   Posted 8/5/2016 10:57 PM (GMT -6)   
Good luck. I hope you get some answers!

lilac7
Regular Member


Date Joined Nov 2013
Total Posts : 230
   Posted 8/13/2016 7:24 AM (GMT -6)   
just to update. my doctor thinks it might be fibromyalgia. no tests. I'm still not satisfied. I have pain and numbness in arms and legs but my knees have a constant burning sensation and swelling

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/13/2016 12:44 PM (GMT -6)   
I would get a second opinion from a different rheumatologist.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Survivor66
New Member


Date Joined Aug 2016
Total Posts : 3
   Posted 8/13/2016 3:30 PM (GMT -6)   
Voice,
It takes time before RA will show up on tests. I remember being happy with the diagnosis because finally I knew what it was.

Since you say it gets worse with movement I would say that it's not RA. RA is far worse in the morning or after not being active for a period of time. The joints that hurt have they had injuries before? If so it could be osteoarthritis which is a wear and tear arthritis and not autoimmune. Are you ill a lot? Do you have many infections? If so that's a good indicator of autoimmune disease yet undiagnosed.

Finally if you want answers go to a rheumatologist who with his/her experience can get to the answer you need to start feeling better.

Also you will need to be willing to try medications that have some serious side effects. After 24 years of diagnosed RA I can say if it weren't for these more effective drugs my life would have been far less satisfying. With them I've been able to raise 3sons on my own and advance in a corporate job to First Vice President in a worldwide bank. I can't even image what previous generations did with RA pain.

Good luck and keep moving.

lilac7
Regular Member


Date Joined Nov 2013
Total Posts : 230
   Posted 8/16/2016 12:54 PM (GMT -6)   
thank you guys.

lilac7
Regular Member


Date Joined Nov 2013
Total Posts : 230
   Posted 8/16/2016 12:58 PM (GMT -6)   
the thing is ... it's really emotionally draining and from last few months my mom has suffered so much that i don't have any energy left. i've so closely emotionally suffered with her and i thought i'll lose her anytime now. the drugs have caused her severe stomach issues and she landed in emergency. i don't know how to deal with it anymore

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/16/2016 8:56 PM (GMT -6)   
I know the emotional struggle you are going through. I had to be caretaker of my sister for six weeks after she was dismissed from the hospital.
The emotional stress can send us into a flare of our disease. It triggered vitiligo in me from my episode of caring for my sister.

Try your best to take some "me time" to ease some of the stress.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Survivor66
New Member


Date Joined Aug 2016
Total Posts : 3
   Posted 8/17/2016 5:11 PM (GMT -6)   
I too can relate to what you are going through. I had my mom here with me for years and then in hospice at home for 8 months after 13hospital stays in one year! I was numb and exhausted. I did reach out for help for both of us. All I can offer is to put one foot in front of the other. Take it slow and breathe. Caring for a loved one can actually cause autoimmune diseases to flare their ugly head(s) depending on dynamics and how taxing it is.

Another thought about RA...if it is found on one hand it will be on the other also. Same about any of the body's joints that have multiples. I have it in all including my spine. In mom's case she had it in hips and in the end years we learned she had Anklying spondylitis where the spine fuses together. Painful and a very limiting autoimmune. Also I've tracked autoimmune diseases in the extended family going back 3 generations and I did the genetics which was positive for a number of autoimmune diseases.

Recently I had my right hand improved. 4 new knuckles and all the tendons repaired so that my hand doesn't drift to the right any more. I'm thrilled with results! So much I can now do than before, like simple thing of holding a bar of soap!

Sleep is very important. I found that putting apple cider in warm bath before bed works wonders on joints and seems to hasten sleep mode. Take care of yourself. Pamper yourself. Eat right! Do slow exercise and work up to more, try walking.

My very best - D

My conditions- RA with felty syndrome in spleen that causes me to have neutropenia(neutrophils are a white blood cell that fights infection when there is enough of them), OSTEOARTHRITIS, SOJORNS, PSORIASIS, ASTHMA, SEVERE ALLERGIES, IRRITABLE BOWEL, DIABETES 2 from cortisteroid drugs for RA, also CATARACTS removed in both eyes from cortisteroid drugs, numerous back surgeries from my back disintegrating, HEPATITIS C from infected transfusion, DEPRESSION, ANXIETY, PTSD related to childhood sexual abuse. Almost all of the others are autoimmune diseases which according to an article I read just today may be as a result of early traumas also.

lilac7
Regular Member


Date Joined Nov 2013
Total Posts : 230
   Posted 8/18/2016 1:16 PM (GMT -6)   
couchtater that's true. the emotional pain is a big problem, especially when you are not sure whether to worry the most about yourself or your loved one.
Survivor66, I agree. Actually whenever she's having a flare up I start having pains as well. I agree that the sleep factor is important and that's what is making our situation even more painful. I know it can be really bad during flare ups, especially when you have low pain tolerance. And my mom stays awake all night and sometime even cries, that's how bad it gets, and naturally I don't get to rest either. I feel myself going crazy because I'm stressed all of the time. Now her both arms and legs are aching and despite the medicines the pain isn't easing. I think we should visit a different rheumatologist. The problem is that she doesn't understand her condition too well and the doctors wouldn't explain it to her. It's hard to tell her that she will be having such flare ups. She always panics and reacts really emotionally. Now the medicines are destroying her digestive system and we landed into emergency for her food poisoning. Still can't digest food well. SO all of it doesn't get me the chance to think about my own condition and I'm just pissed off that if turns out to be arthritis for me, how will I be take care of her. Care and pampering myself isn't possible with the constant stress. Pray for me.

Survivor66
New Member


Date Joined Aug 2016
Total Posts : 3
   Posted 8/19/2016 10:59 AM (GMT -6)   
Does she have RA? What does she have? Do you go with her to Doctor?
Ask a lot of questions about her condition. Write down condition name and then do research on it online to better understand it. Find out if it is heredity based.
Insist that she have meds for her pain. Call doc when she is in pain or having a flare. They usually want to know a number from 1-10 of how bad the pain is. (10 is worst ever experienced.) Don't exaggerate because they will know and then not be willing to help.
Share the situation and ask for help getting resources to give you a break. Home health, church or other community groups to give you some time off.
Take control of the situation. Don't let it overwhelm you.
You can do this. Put one foot in front of the other. You will get there.

lilac7
Regular Member


Date Joined Nov 2013
Total Posts : 230
   Posted 8/19/2016 12:29 PM (GMT -6)   
Yes she has RA and she in on medication. I am already overwhelmed but trying to get through this.
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