Please help me- possible RA symptoms

Hi, everyone. I'm (sort of) new here!

I used to use Healingwell for a long time for the Fibromyalgia forum. I am 26 years old and was diagnosed with Fibromyalgia almost 7 or 8 years ago now (the rheumy confirmed all of my VERY painful tender points).

The reason why I need to reach out to those affected by RA is because even though I have fibromyalgia, there seems to be much more going on within the past few years, but I do not have health insurance coverage (I'm working on it) in order to have a full work-up. I am completely untreated, live in pain that never ever goes away and to make it worse, I have symptoms that don't seem to be related to Fibro. It has been suggested by a few doctors (back when I had insurance) that I seem to have an autoimmune disease on top of the FMS.

But no further tests were able to be done, after I lost insurance.

I suffer with recurrent infections. Everywhere. From sinus infections, yeast infections, bladder infections, pyelonephritis (kidney infections), respiratory tract infections, and the list goes on. I have done trial and error periods with vitamin supplements that my doctor said would help boost my immune system, with no luck. Nothing seems to help the issue. I'm just always sick with infections and fevers and I can't even hold down a job. I have been fired quite a few times due to not being able to meet job demands and/or being sick all of the time.

My kidneys have been affected for quite some time. Back when I was still on my father's insurance, my doctor found that I always had protein and blood in my urine. A urologist confirmed that I have some kidney damage, although he wasn't sure why. These issues haven't gone away, but I can't follow-up with a specialist.

On top of the infections and kidney issues, my joints are progressively getting worse, and I know with Fibro it is more in the muscles, not the joints themselves. But my hands, wrists and fingers particularly are bothering me more and more-- I can FEEL it in the joints themselves. It is significant pain and stiffness. My hands sometimes resemble claws because they get so stiff and locked up. The pain and severe stiffness is also worsening in my knees, and it is the WORST in my ankles and feet lately. Sometimes my elbows bother me. My knees, elbows and jaw seem to lock a lot, where it hurts severely to move them then.

I cannot walk around a grocery store without needing a wheelchair some days.

The morning stiffness also lasts quite long; once I wake up, I feel like a stiff board for several hours throughout the whole day.

My fatigue seems to have worsened too. The fatigue is so debilitating some days all on its own. I have upped my iron supplement intake in case of being anemic, but I haven't been taken them for long enough yet to see much of a difference overall. I'm tracking it. But the fatigue is still disabling.

And I have been progressively having issues with my eyes for the past couple of years. They feel so inflamed, dry, sandy and gritty that my eyes themselves can ruin my days sometimes. It's unbearable. I try eye drops during the day and eye ointment/lubrication at night, with very little to no relief. My entire body just FEELS inflamed, although it doesn't LOOK like it.

My main question is: can ANYBODY with RA relate to this? Because I know a fair share of medical knowledge, and I KNOW that Fibromyalgia doesn't progressively get worse over the years nor does it cause a lot of the 'extra' symptoms that I deal with. Does it sound like this might be RA, honestly? I just want answers. My life feels like it is over because I can't afford medical care, and I am no closer to answers or treatment. My joints make me feel like I am 76, NOT 26-- LITERALLY! I have no quality of life at all anymore. I spend a lot of my days crying because the pain and stiffness hurts so much.

I do NOT get the RA skin nodules though. Does that mean I don't have RA? Does everyone get those? I also don't notice much visible swelling, other than a few months ago, I noticed that my rings barely fit on my fingers all of a sudden. I couldn't even get them off! But then a few days later, they fit again suddenly. I had the same thing happen a few weeks later (my rings were too tight on that finger), and then they fit again a few days after that.

I don't want to be one of those annoying people who ask "do I have the same disease that you have?" blah blah blah. But please.. just let me know if anyone relates to this, and whether this sounds like it COULD be RA, NOT just Fibromyalgia?

THANK YOU!
Nice to meet everyone!

Eden

Aw, thank you so very much for the reply- and for the kind words!

Can RA put you in SO much pain though that you barely go up & down stairs, or walk around a grocery store without being in a wheelchair? Things get VERY bad for me pain-wise, and it has seemed to be within the past couple of yrs that these "arthritis"-type symptoms have arisen.

I eventually definitely need to get checked for lupus too, just to rule it out.

If you don't mind me asking, what were your FIRST symptoms ever of RA? And do you have issues with your eyes?

Thanks again!!!

Eden

Thank you so much Carole for your kindness!

Unfortunately, there is literally nothing around me! I live in a very small town (actually considered a "village" it is so small)! and all of the hospitals around here are very stigmatizing to people without insurance.

I'm working on signing up for Obamacare this week.

Yes, the stairs have been a battle. I live at home again-- I have for a long time now since I helped my mom out when she had cancer and it is also tough for me to keep a job/ steady income. Unfortunately, in my dad's house, there is a staircase and then my beloved ferret is only allowed downstairs in the basement which is ANOTHER set of stairs. Some days I am so bad, I will crawl down the first steps on my butt and then be afraid to get down the other stairs so I don't always see my ferret. My bf takes care of him And it's rough too because my family is very insensitive to me.

I wasn't sure if I ever had "swelling" in my hands, feet, etc. I don't have any 'visible' swelling, so I wasn't ever sure if it was RA that I have (who knows), but yes, I have noticed my rings fit sometimes and other times they can't come off. But it's weird because they don't necessarily LOOK swollen, they just feel like it sort of. My big knuckles on my hands do get very very red at times though.

Interesting you mention the feet, because they're one of my worst areas now (along with my ankles).

I never realized that fish oil helped dry eyes, but it's interesting that you mentioned it because I was taking it for a while every day... and then stopped. Ever since I stopped, my eyes have been bothering me again!!!!! I did not realize it until you said something! I wonder if it was helping me!?

Thanks again!

Eden

Hi again, Carole! Gosh, I do really appreciate your help & (especially) your kindness (there doesn't seem to be enough of it in the world)!! And no need to apologize for talking about YOU! I totally understand! We are ALL going through some type of journey and our stories are worth being told!!

Luckily, I'm going to a chiropractor today (he's one that I can actually afford- he really works with you payment-wise)!... He won't be able to address ALL of my issues, but I will try to talk to him about everything I can at least. To see what he thinks about my numerous symptoms/ issues/ arthritic-type pain that is very unlike Fibro. Hoping he can at least help my neck/ head/ jaw and face pain while maybe guide me into the right direction for the issues that he cannot treat.

And yes, I meant my BOYFRIEND although he is ALSO my best friend, so take it any way you'd like. Hehe!

Yeah, the only issues that may indicate swelling for me is the issue I have with my rings, too. I refuse to take them off though because they were my mom's... and she died of cancer almost 2 yrs ago now. These rings are my everything and I get soooo upset the days that they don't seem to fit well!!

I also have trouble making fists at times. My hands end up resembling claws, they become so stiff, rigid and painful. I hate to relate my pain to yours...I don't know if I have RA or not. But I *DO* actually relate to so much that you have to say!! Thanks for helping me understand things better.

That's awful that your aunt dismissed your RA like that. How can RA be "over-diagnosed" anyway? Aren't the symptoms pretty... distinct? Especially if you have the joint damage? I don't know everything about it though, so i could be wrong. Either way, I can relate to how your aunt reacted. Almost my entire family dismisses EVERYTHING I have and everything I feel.

Hugs! I hope YOU have a great day!

Wish me luck for my appointment! Stay in touch!

Love,
Eden

I forgot to add my condolences about your mom. You've gone through so much - you must be a very strong person.

My RA started about 6 weeks after my dad got out of the hospital. He'd gone in to have some stents replaced in his heart and contracted MSSA while he was there. It's "related" to MRSA, but not as bad, according to his doctors. Might not be quite as bad, but it darn near killed him. Since I'm an only child, I was the support system for my mom (who had just finished chemo for breast cancer.) I really think the stress of that time triggered my RA onset.

Anyway ((hugs)) again. I'll be thinking about you today and I hope your app't goes well.

Yikes, you have had a rough time of it. I hope things get better for you! I'm glad your appointment went well. That's interesting about the leaky gut.

My dad's doing much better. He had a full knee replacement a couple of weeks ago. It was a bit stressful for all of us, but he came through with flying colors and the physical therapist said he's doing great, especially considering that he's 6'4". It was great to get him out of the hospital though. One of his sisters sent him a text that said, "Run, Forrest, run!" the day he got out.

I was thinking about your posts last night and realized something - what my rheumy calls "swelling" is actually more like puffiness of my joints in my hands. They do turn red a times too.

Have you looked at the RA Warrior website? (rawarrior.com) She's got a ton of information there.

Hi again Eden (Jenna)

I'm sorry you're having such trouble with your hands. I often have puffiness/swelling without warmth. Sometimes my hands are like ice cubes. I've found that compression gloves help keep them warm and and the compression helps the ache. I got the gloves from Amazon for about $20.

You're in school? That's great. I was a non-traditional student; I got a degree in engineering when I was 33. Before that I worked in the grocery business, so I'm very thankful I have a desk job now.

I'm doing well - thanks for asking. Enbrel has been a miracle for me. I hope it keeps working.

Wishing you a great day with minimal pain.

I did check it out a bit (her site)! Just need a bit more downtime to actually sit and read more of it! Yes, with college, I barely have any spare time at all. And I'm only in community college right now!!

It's been great, I started out absolutely loving college, but over time, my pain has just gotten in the way more and more. I feel miserable and it's tough enjoying anything, let alone fully concentrating on my school work. All I can ever concentrate on is how much pain I'm always in. Sometimes I wonder if I'm going to be able to go on with school It's just such a shame because I'm the type of person who loves to learn and loves being challenged... I like to go above and beyond to create exceptional work. I always knew that I'd love every second of my college journey... but it's just getting tougher and tougher because of the pain and headaches...

I'm also not sure what I want to get a bachelor's degree in, and a Jenna (Eden, hehe) without real goals is a very depressed Jenna (Eden), indeed! I like to be able to see the big picture and really truly have something to work towards!! I love being passionate about something! (I'm just doing General Studies right now in CC to get a good foundation of basics, so that I could go on to do whatever I want to)!

Engineering?! How cool! That's what my boyfriend is doing! I'm so glad he's decided to do it because it really suits him and it's everything he's ever wanted in a job-- it's right up his alley!

How did you know my name was Jenna? LOL

Hope you're well!!!!

Eden

I saw your real name in one of the other threads.

General studies is a good place to start. Don't commit to a major until you're sure. My stepdaughter graduated with a degree in general biology and ended up washing glass in a lab. (A nice way of saying she ran dishwashers all day.) She wishes she had done things differently. My daughter is almost 23 and hasn't finished college yet. She's in the Coast Guard and is taking classes online. (Which they pay for!)

You might want to take a break from school at some point and focus on your health. I know you're in a tough situation though. Just do what you know is best for you and don't worry about what others think.

Which type of engineering is your bf interested in? I'm electrical - it's a good fit if you like weird math.

I was 35 when I finished my bachelor's. I got an AA (Associate of Arts) when I was 20 and then worked in the family business for 8 years. Then I worked for an engineering firm as a secretary and then tech while I went to school part time (and eventually got a divorce from my daughter's dad). The firm offered a voluntary layoff with tuition reimbursement about the time I moved in with my now-husband so I switched to full-time school. I finished the BSEE in 98 and walked at graduation with my daughter yelling "that's my mom" from the stands. (She was 7.)

The career testing sounds great. I wish they had done that at my CC. And it sounds like you and the bf have a good plan.

edited to add: I hope this doesn't sound like I'm bragging. I just wanted to point out that you can go to school at any age. I wasn't even the oldest one in my class when I got my BSEE!

Post Edited (Carole_D) : 3/10/2014 10:02:13 AM (GMT-6)

Eden
A lot of what you are describing sounds a lot of what I have been going thru. It's scary I was diagnosed in 2011 and since then it seems like I having a new autoimmune disease. My fingers did the same thing at fist nothing was wrong even with the MRI my Dr did with my hands and then a month later my Dr. did another MRI on my hands and it showed RA. I found a great dr and she has been the best Dr I have ever seen. I hope you get insurance soon so you will get the answers your looking for. I will keep you in my prayers.

Eden, I was only able to skim through your poast & the comments. As my vision starts getting bad and everything gets really blurry to read on top of struggling to keep my eyes open and stay awake. My auto immune diseases are kicking me butt! Anyways, I can't give you much information on whether you have RA or not. I'm waiting to find out if I have arthritis myself. My knuckles in my hands are swollen & hurt really bad too. I noticed on your profile that you like to write and poetry, so do I! :) The upsetting thing is I can't really write much anymore, it just hurts too much to hold a pen or pencil. Even typing hurts, for some reason I preferr to write though, well no I like typing too. From what I've collected by skimming through your post your mom had or has cancer, did she make it through? I saw someone said they give their condolences. I know how hard that is to see your mom struggle through cancer. I have been in the system (foster care) since the day I was born. I lived with this one family for 15 years. To me, that family might as well have been my biological family since I don't even know my biological parents. My biological brother wont talk to me either, even though he's the one that seeked me out first, but that's not what this is about, lol. My bio mother passed away when I was 2 1/2 from serosis of the liver, I've seen pictures of her and she would visit me often but I don't remember that at all. My bio sister, bio grandma and I talk though. As for my bio father he bailed on Tracy (bio mom, I don't call her mom) when he found out she got pregnant, apparently he already had a family, wife with kids, I've been told I have at least 4 other bio siblings that I know nothing about, not even their names. I've wanted to meet him or see a pic of him, I've asked if anyone could tell me much about him but no one really knows him. I only know his name because it's on my birth certificate. My sister said he was a bad man and would end up hurting me if I found him. (sorry I totally just went off topic, once I get started I kind of just keep going, and before I know it I've wrote a book, lol) Anyways, my dad, (foster) passed away when I was 6 years old from a heart attack, boy do I miss him. I can only remember a few memories with him & I have nothing of his to remind me of him, except for a couple pictures. My mom (foster) and I were super close, I was glued to her, I went everywhere with her & her and I have always shared a bedroom. I found out she had breast cancer when I was 13, apparently she had it 2 years prior to that, it got better but came back. My brother was so upset that he was never home, he dealt with it by drinking and drug use with his friends. My grandma who lived with us was old with bad knees and hips. She can be really cruel, would scream at my mom saying how lazy she was, my mom was in a wheelchair at that point. There was no one there to take care of her, so I did it. From age 13-15 my life surrounded around her care & comfort. I also had to care for my little sister and adult uncle both in wheelchairs, keep the house clean, do my homework and go to school. I hardly had time to sleep or hang out, actually I never had time to hang out. My mom got so sick she couldn't even wipe herself after using the bathroom, I had to do it for her. I helped her shower, cleaned her wounds, got her dressed, gave her emotional support while trying to keep my composure. The last stages of her life was in a hospital and then hospice center where they didn't clean her wounds or give her a sponge bath or anything, so I did it. Her cancer spread to her brain. I had to hold her down so the nurse could give her her shots through the IV, my mom was crying and telling me "no, I don't want this, why are you doing this to me?" I still had to keep a positive look on my face. The last time I saw her she didn't even know who I was. She was afraid of me because she literally just didn't know me, she passed away the next day. That was probably the most awful thing I went through. It really is hard to have your parents be sick and especially hard when they pass away. Heart to heart I send you my genuine love & hugs.