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Invisibility

  • By howardhill

    Please let people know that the supplement msm 1000 mg capsule have kept my RA at bay for 14 years, even doctors ask me what I take because they can’t find inflammation in my system,thanks Howard

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  • By noahopz

    I Was just DX with RA I am 36 years old, gained alot of weight and the stresses of life caught up to me causing me to eventually feel like I had enough and needed to get back in the gym. After 3 weeeks of working out, my joints swole up like crazy- I couldnt walk or sleep or do anything for days, eventually I went back tot he Podiatrist who initially told me I had GOUT, ended up sending me to a specialist who officialy dx me with RA – due to my factors being high, lupus ruled out and gout ruled out – no one seems to understand what I Am going through, not even my wife who I Think fears for my future as a provider than actually recognizing the pain that I Am in and how hard it is to get by. I just wanted to know any one elses feelings about how they handled things when they first found out about this disease and that they were dx with it. I always thyought it was a nothing sickness, now I See that it changes your entire life; I am tso tired of not feeling comfortable ever.

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  • By Richard Faust Moderator

    Sorry to hear about the diagnosis noahopz. One of our contributors wrote a ten part series on things she would like to tell her newly diagnosed self (I recommend the whole series). Number one is on actually receiving the diagnosis: https://rheumatoidarthritis.net/living/no-1-its-just-a-diagnosis/.

    As you are experiencing, finding out you have RA is emotional roller-coaster. This aspect of the diagnosis often takes a backseat to the physical, but is very important. This article from our editorial team looks at this aspect, with some information on dealing with it: https://rheumatoidarthritis.net/symptoms/depression-anxiety-and-emotional-problems/.

    Know that you are always welcome here for information and support. Please keep us posted on how you are doing. Best, Richard (RheumatoidArthritis.net Team)

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  • By ScareCrow

    I was diagnosed when I was 22. I’m now 36 and in the past two years my body has lost it. Everything had been so “easily” managed compared to this. Now mentally I feel like letting go. We’ve all fought the pain and fatigue and the mental pains this and PsA cause, but many of us talk about the severity of the depression that can and does occur. Sometimes out of nowhere… Everything seems to be going so well. So much happiness and then you get a flare or old pain rears its head and something as simple as typing or just trying to write a sentence on paper is difficult and you know what’s coming. That pain that can be debilitating and everyone looks at you like “you were literally fine just 5 minutes ago” I look young for my age and I look healthy and I know it throws people off. I get it. But it hurts so bad sometimes to get those looks from people that think I’m faking it. If they only knew my husband gives my Humira shots twice a month, or that for the first year on my weekly 20mg dose of MXT I would puke for days causing me to lose way too much weight, or that now if I don’t take 900 mg a day of gabapentin that my fibromyalgia gets so bad that I can’t walk. Mentally I’m weakening and I don’t know how much longer I can deal with this. I don’t know how people stay so strong through this! I can’t have children because of this I can’t hike or run or dance. I can’t wear any kind of heels. I have to watch my every move, because if I don’t I trip and fall or I run into walls and doors and god I’ve run into so many people because I’ve slipped or twisted my ankle. Not one of my friends can understand or can even have a conversation about it because now I’m “just harping” about the situation. “Stop talking about it and do something about it” they say… I want nothing more than to run the “f-bomb insert” away… I wish people understood the impact of their lack of comprehension of this. I know they care, I know they’re just trying to be helpful and I know that maybe I’m being too hard on them and maybe about everything else too. All I have left to live off of are my hands or my brain. My hands are failing me slowly and the drugs are killing my brain. I don’t know how to save myself in this. I have a good rheumatologist but I wish there were more that could be done. This cannot be it. I’m sorry I’m just whining, but god there’s no one to let me cry as often as I feel I need. I’m a “f-bombing insert” INTJ, I HATE crying. I HATE this vulnerability. No one knows what to do with me when I cry. They all freak out and my insurance doesn’t cover mental and right now I’m a freaking mental case!!! LOSING IT!!!! Here’s the sad part. Any form of attention that follows it makes me so treadfully uncomfortable I feel guilty for weeks after. The point that I’m not really making here is that this can be so mentally debilitating and I think all of us want to scream at something or someone for doing this to us and yet we have to be so strong because it could be worse right? “It could always be worse” they say. I HATE. When people say that load of crap to me. Don’t you think I know life could be worse??? But this is what it is right now and right now this sucks pretty freaking bad so right now worse is already here for some of us!!!! Stop using that freaking phrase on us!!! It can be hurtful not helpful like you like to think. Some times prospective isn’t what we need. Sometimes we need to let out the irrationality of our thoughts without judgement or phrases like that. And I’ve very unkindly done this thing I now hate. How horrible that I’ve done that to someone?!?

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  • By Richard Faust Moderator

    Hi ScareCrow. This is one place you don’t have to worry about venting. The emotional/mental aspects of RA are very real and a serious part of one’s overall health. I don’t know if you have looked into RA support groups, but your doctor may be able to help with this This article looks at managing the emotional aspects, with some tips: https://rheumatoidarthritis.net/living-with-ra/managing-emotional-problems-and-stress/.

    More than any article that I can direct you to can, I want to stress that you are not alone. Their are many in the community that understand because they have similar experiences. You are always welcome here for support or if you have questions. Please keep us updated on how you are doing and thank you for being part of the community. Richard (RheumatoidArthritis.net Team)

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  • By trebleinthekchn

    I was recently diagnosed with rheumatoid arthritis in September of this year after suffering all throughout my childhood with chronic joint pain. I would like others, especially treatment providers to understand that each case is unique and not all patients present the same symptoms. It’s just as important to listen and not jump to conclusions. I was always labeled as being “just tired” when in reality, it’s so much more than the usual case of being “just tired”.

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  • By Kelly Dabel Moderator

    Hi trebleinthekckn, Thank you for taking the time to comment. You bring up a valuable perspective. I hope that we can be a helpful source of information as you navigate your recent diagnosis and that we can also be a source of support and community. Please let us know any questions you have. We appreciate you sharing and being part of our community. Best, Kelly, Rheumatoidarthritis.net Team Member

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  • By jmwaxman

    Hi Everyone. I’m writing because I have had a new experience dealing with my RA. I was diagnosed 3 years ago at 35. Single male, non-smoker, no drug use, non-drinker, slightly overweight. My biggest downfall sugar. After a year of methotrexate I lost my insurance, but felt it was ok because the meds made me feel so sick anyways.

    This past year I kept having flare ups and seeing my legs swell severely. I kept talking about how i felt king kong was hugging me, I couldn’t breathe during a flareup. I’d over do my work for 3 days then be in bed for 4-5 days.

    Until last week. It’s xmas hustle, my grandmother visited from devastated puerto rico, i decided to do a small remodel at my business and i planned a vacation for new year. what the hell was I thinking? Construction completed on Sunday last week, after which I spent all day saturday running around shopping and spending time with grandma as she was going back home Sunday as well. I went in to my business Sunday night and varnished two doors and spray painted a vent not wearing a mask.

    MONDAY morning I could not breathe, I was gasping for air and began coughing up blood. I ended up calling an ambulance, now in ICU 4 days on oxygen. My doctors told me that I have repiratory disease due to my RA and that inhaling the chemicals and dust actually made it even worse and my lungs had begun to fill with blood. They put me under and have flushed my lungs. I cannot walk to shower without oxygen. I will be on cpap machine upon release as well as oxygen. I’m only 38. I’m a good person. Why is this happening to me? I know people who do drugs and toss back vodka like nothing. they smoke and are in the worst condition and they are out there enjoying their life right now. it’s just crazy.

    I just wrote my thoughts to share today because I had no idea the RA was so severely affecting my organs, i just kept thinking about my swollen legs and hands, but its so much more that that. Follow up and get the care you need. God bless and Merry Christmas and know there are people out here that understand and feel your pain!

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    • By ktinflorida

      I am so sorry to hear that. RA is effecting my lungs too, but not to that degree. You have got to get back on meds before it kills you. This is a systemic illness – It doesn’t just hurt joints. My liver is also taking a hit. I take injectable methotrexate and my liver is less inflammed on it than without the med (which is known to cause liver damage after prolonged use). It seems like we can’t win sometimes until something like what happened to you. Then we realize maybe we were winning after all.

      I hope you get to feeling better and learn to take it a little easier on your body.

      KT

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    • By kkharrod

      Thank you for sharing! I will be more careful going foreword. I hope you can get off oxygen and get good insurance. Diet helps and all, but I went a year without medicine and my RD progressed. I recently got insurance through the government Healthcare Marketplace that is on $38 a month for people making under $50,000 Florida Blue Silver PPO. I am so sorry for your pain. 😞❤️🙏

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  • By jmwaxman

    Hi KT!

    Thanks for reading and replying! Its touching just to have a response and know i’m not alone. VERY MUCH APPRECIATED!

    Happy Holidays to you!

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  • By rebeccav

    The biggest Invisibility issues that I have found with RA, is the way it makes me feel. The doctor once explained to me that RA is the result of an overactive immune system. He had me think about how I feel when I have a cold or flu. That suppressed feeling that keeps you in bed and keeps you tired; that feeling he said is your immune system working. Unlike most people once they get well and feel better, the feeling goes away; however I am stuck with that feeling all the time. I guess what I’m saying is that does not always translate on the outside and people that don’t have RA find it hard to understand. I have had to tell employers over the years about my RA and how it affects me. I have found that it is not always understood by others. They only hear the “arthritis” part and don’t realize there are more things involved than sore joints. The worst is when I express how tired I feel and how achy I feel only to get advice from their experience with arthritis and how a little Bengay works or take a couple Aleve. I almost wish sometimes that there could be an RA suit that people without RA could wear. The suit would make them experience what I feel; the heavy and tired feeling, the stiffness and pain. But until then, I will try to keep an open mind and do my best at explaining my situation.

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  • By ShannonLea1218

    I know there’s not been activity on this thread for a month, but I have to jump in.

    I’m a 45 year old Caucasian female, I was diagnosed with sero negative RA several years ago. With RA being an often times elusive disease, not being able to “prove” it with labwork is seriously frustrating. How to react when the diagnosis itself is based on “invisible” tests/results?

    I’m currently having my 1st serious RA flare. As in the case of jmwaxman, I also lost my insurance last year and didn’t think it was too big of a deal having only been on Plaquenil and having questionable at best results (yet another reason I feel the diagnosis is so elusive). The thing which resonates with me is not the lung issues but the feeling of being squeezed.

    I’m struggling to put in to words the sensations I’m having. RA is such a sneaky bastard, I can’t even tell someone else what I’m going through. And not having visible symptoms (at least not currently, as in no obvious joint deformity) somehow ironically makes me feel worse.

    I’m new here, and absolutely appreciate the time and effort others have put into this site on both sides.

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    • By Kelly Dabel Moderator

      Welcome ShannonLea121! Thank you for chiming in and sharing your story here with us. So glad that our site has been helpful to you. We’re glad you’re here and assure you that you are not alone in this. So many here can relate to the invisibility you’ve described. Wishing you some relief soon from your flare. Please reach out anytime, we’re here to support you. Best, Kelly, Rheumatoidarthritis.net Team member

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    • By Richard Faust Moderator

      Sorry to hear you are struggling ShannonLea121 and had so much difficulty with diagnostic issues. You mentioned lung issues, so thought you might be interested in this article from our editorial team on lung conditions that can accompany RA: https://rheumatoidarthritis.net/symptoms/lung-diseases-and-conditions/.

      I know losing your health insurance may make getting treatment for the symptoms you are experiencing difficult, but hopefully your doctor can direct you towards any programs that may help. One of our contributors put together this article on assistance programs, although it should be noted that the information has been updated to reflect that some of the programs have changed: https://rheumatoidarthritis.net/living/six-assistance-programs/.

      Know that a lot of people here understand what you are saying about the difficulties of dealing with a mostly invisible condition. Heck, one of our contributors with extremely visible RA wrote “I feel for my friends with RA who struggle with an invisible illness that they have to explain to others, who are often not understanding and supportive. While there are things I don’t like about always being visible, at least I don’t have to defend myself and explain that I have pain and a condition that can make life challenging:” https://rheumatoidarthritis.net/living/stick/. This community is here for you. Best, Richard (RheumatoidArthritis.net Team)

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  • By ShannonLea1218

    THANK YOU Richard for the information. There’s so much to go through here on this site, I welcome the direction. I do fortunately work in health care so that gives me an advantage with regards to trying to navigate without insurance, and I’m grateful for that. I am working on reading through the information as I can get to it with my current symptoms flaring up.

    Thanks again for the head’s up!

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