Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

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linzsey 09/21/2022

I am just wondering what happened to our empathy for each other on this support group. I understand that people are get busy sometimes and just forget to answer others posts back. I know that I am not the only one who looks forward to hearing how things are going for our members. I miss you guys tremendously and I always check to see you guys are giving a update on your RA journey. I hope all is going well for you all.

I told you guys a couple years ago about me having a terrible time with my platelets and how the doctor just kind of told me not to worry about it. Well, about four or five months ago, I started bleeding. At first it was slow, but then it increased so much that when I bled (I had bruising as well) I couldn't stop it. I got so weak and I couldn't breathe that I had my son take me to the hospital and my hemoglobin was 6.2 and was told that I was in hypovolemic shock!!!! I was given blood to bring my levels back up and referred back to my hematologist, who use to take care of me when I had platelet problems in the past. After six weeks the hemotologist finally called and set an appointment up with me for several weeks in the future. In the interim, I had already began back bleeding again and I had lost off the blood that they gave me. Well, the doctor didn't seem too concerned and told me I was a little anemic. He sent me to have my cbc done that day and my hemoglobin was back down to 7.1. Also my ferratin was 9.9 and it should be at least 22. He didn't even bother to do a progress note on his findings, but a month later his office called and set up me an appointment for IV feraheme, which I got on Monday. I believe that this was a too little too late as I am still unable to walk more than 20 yards without having to rest. I am very afraid for myself and my family as well because they depend very heavily on me.

I am sorry to tell you guys this, but I don't have anyone else to talk to about it, and right now, even you guys seem to be missing in action.

I don't expect anyone to answer me back, because I think this forum has turned into a cut and paste internet journal, except for Kim who never gets a response even though she deserves one from whoever started the post. I don't want to butt in on other's conversations everytime, but if I don't answer, I feel sorry for Kim because she is not being valued as a member of this group and she absolutely has contributed a lot through the years. I know we are not all equally welcome to participate in this group, but sometimes we don't have anyone else to turn to.

I hope everyone is still kicking. I still care about you all and I miss you as well.

Kimhurts 09/24/2022

I'm sorry to hear about your platelet problems. I hope they are able to figure out what is going on. Have they done a bone marrow biopsy? I randomly have platelets drop and become anemic, but they have never found anything but my bone marrow isn't producing the way it should. I also bruise very easily. I know this makes you very tired and frustrated. Keep us posted, if it only ends up being me.

I'm sorry I didn't respond faster. I have a bunch of things going on. I don't even have the energy to write about it right now, but maybe I will in a few weeks.

linzsey 09/25/2022

Hi Kim. I understand so much about the low energy, I don't really know what the doctor is thinking, but my platelets were 31 then they 45 and last week I was at 72 - so they are slowly increasing but that is still low. But he said that my blood clots very much and it was hard to really know how many platelets were in there. He didn't write a progress note, so right now, I have no idea what my diagnosis is.

My PCP is being silent- because she doesn't want to have to take on the whole complicated ball of wax, and I don't blame her.

My RA doctor told me he didn't want any progress notes about my hospital visit, and he says, "oh, just telling me about it is enough" - so right now, I am not even taking any aspirin for my RA, i just spend a lot of money on topicals, and they don't even touch the pain.

I think the doctors get tired of hearing the same complaints and want us to get used to going through this, but when it flares up, sometimes you wind up in the hospital and they don't want to hear it. Just patch you up with superglue and a prop you up with a toothpick and say "you're stable"

Man, I have really turned into a whiner. Sorry Kim. Thank you for writing me back. I hope you feel better soon and get your strength up before the next flare.

Kimhurts 09/25/2022

I know what you mean. I have stopped complaining about things I know doctors don't want to hear about and can't do anything about and it is blowing up on me right now. Keep complaining even if they don't want to hear it. I swear it is like something bad has to happen before they care. And if your progress notes are anything like mine, everything is fine, I'm good, things are great. I was shocked to discover I was living alone and totally self sufficient. Truth is. I'm not and haven't been able to live alone in 15 years. No wonder insurance doesn't approve stuff.

linzsey 09/26/2022

So your doctor gave you someone else's diagnosis. At this point, I think I will take no diagnosis rather than wrong diagnosis.

Meanwhile...your condition continues to worsen and your deformities nodules and bakers cysts set in for the permanent long-suffering RA look from head to toe. Then one day, this same doc will take one glance at you and give you the right diagnosis and all the medications that are now too late to take to make a difference.

That's how it usually goes I think because RA is hard to corner until it changes your ability to take care of yourself and keep your house. One chore a day.

Feel better

LeSwan 05/31/2023

Hi Kim and Lindzey, are you two still on here? I just discovered this site. I’m 46, and have very aggressive RA. I was diagnosed about a year and a half ago. Every medicine they’ve had me try, has had an adverse reaction, except prednisone. I recently moved states and am without insurance, and having a flare that is taking my ability to walk, and use my hands. I’m in so much pain, and feel pretty helpless. Nobody in my household seems to grasp what I’m going through very well, maybe it’s because I’ve tried so hard to not be salty or to tax them with my burdens. Anyways, I’m sorry to hear what you two have been through and continue to go through. I think these sort of sites sometimes become full of bots that seem pretty human, but aren’t. I haven’t fully explored this site yet, but that being said, am grateful I came across your messages. I wish you both better days:)

LeSwan 05/31/2023

linzsey 06/08/2023

Hi LeSwan

I am sorry for being a slow response. I used to check this website everyday, but slowly everyone left so we went through a dry period but I hope everyone comes back again.

I am glad that you found this forum. There are a lot of good people that are still a part of this group, a lot have not said much since the pandemic, and I think people forgot that rheumatoid arthritis is still kicking butts everywhere. It is hard trying to keep all your pain and weakness hidden from your family, They won't understand what you are going through but don't let that stop you from doing what you need to do for your own health.

I hope you have the courage to use a cane or walker to help you get around, and to protect yourself from falling. Then don't forget to use kitchen tools while cooking and really explore how many ways you might have to use a can opener in the kitchen. for opening jars as well.

RA can change your life so much, but there are things you can do to help keep your independence at home, I am glad that we get so tired that we have to rest. Use that time to pamper yourself and plan your meals or which chores you will do for that day. Pick only one. And rest when you are tired. Save some energy to make it to bed.

I know you have to go to the doctor, but your best doctor is yourself. Make sure you take care of yourself because you can wear yourself out and those who didn't understand won't notice that you have hit bottom.

I hope someone else will chime in and give you better advice than I have, but mostly I think its good to have a good burger and some music and tangy lemonade to wash it down. That's real medicine for you.. Take care of yourself. That's your job now.

linzsey 06/08/2023

kim where you at?

MarleneJ 06/23/2023

I'm sorry I haven't answered. I don't come here hardly ever. I'm in a big RA group on FB, with 3700 members, most active. I would advise people to find another group. Rheumatoid Arthritis Forum is a good group on FB.

But I will say, Linzsey, your complex blood problems are probably not going to get many answers even in a bigger group. I'm really sorry you are gonna though this, but I don't know anything about what you are suffering.

I have Macular Degeneration now, learning about how to save my sight. I don't post about that here, or in my RA group on FB, because it has nothing to do with RA. It's genetic, but my 4 aunts who had it, none had RA.

I probably won't be back. I do talk to WG via emails, perhaps exchange emails, so you can continue to connect.,

DougTakaBuddhacat 09/15/2023

Hi linzey and Marlene, and greetings to everyone else. I was curious to see what became of this group and DS. It appears to be other-worldly.

Best wishes to all.

DT/BC

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