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Dillards 80: Everybody Take a Shot!


Georgiana

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46 minutes ago, Galbin said:

However, the simple truth is that modern medicine simply has no effective treatments for many illnesses such as chronic fatigue syndrome, fibromyalgia, and rheumatoid arthritis

I wish I hadn’t read that...... They think I have it. RA. I am on a medicine now that is helping with the pain. They did more blood tests and I should have an answer by the 14th. I knew there wasn’t a cure but I thought there was lots of medicines to help. I have seen people with severe RA. They have twisted toes and fingers. I’m very afraid of this.

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@Jaedzia,  there are effective treatments for RA and I'm not just talking pain relief here, but meds that help stop joint damage.  They might be pretty expensive though.  

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On 11/1/2019 at 11:23 AM, princessmahina said:

 I’d be willing to bet Derick grew up trick or treating and would probably like to do that with his kids as well. Also, what parent doesn’t enjoy sneaking a Reese’s from their kids stash after bedtime? 

I call it “taxation without representation” and my kids just laugh and give me some candy...

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8 hours ago, Jaedzia said:

I wish I hadn’t read that...... They think I have it. RA. I am on a medicine now that is helping with the pain. They did more blood tests and I should have an answer by the 14th. I knew there wasn’t a cure but I thought there was lots of medicines to help. I have seen people with severe RA. They have twisted toes and fingers. I’m very afraid of this.

I believe there are effective treatments for RA.  I believe they work better if it is caught earlier with less damage having been done.  I'm not sure on how well they work on reversing the damage on RA though.  It may also not be a 'cure all' (I haven't investigated RA treatments).

I would also note that my mother had fibromyalgia and the medication she was given was extremely effective.

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9 hours ago, Jaedzia said:

I wish I hadn’t read that...... They think I have it. RA. I am on a medicine now that is helping with the pain. They did more blood tests and I should have an answer by the 14th. I knew there wasn’t a cure but I thought there was lots of medicines to help. I have seen people with severe RA. They have twisted toes and fingers. I’m very afraid of this.

To my knowledge, there is quite a bit that can be done! Pain management is important (you might want to consult with good specialists solely dealing with pain reduction once you have a definitive diagnosis) because they really know which pain medication(s) you can take in combination with your other pills and can get you to feeling significant better in no time. You will most likely be asked to also fill out a “pain diary” for a few weeks to see which factors influence how you feel, e.g. weather, food, stress, and so on.  Two family members see pain doctors for various reasons and are very happy with the results. 

Secondly, consult different rheumatologists and see which treatment ideas they offer you. There are different options and approaches and I’m sure you’ll find what works for you.

You’ll get this figured out!! Sending lots of love! 

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12 hours ago, Jaedzia said:

I wish I hadn’t read that...... They think I have it. RA. I am on a medicine now that is helping with the pain. They did more blood tests and I should have an answer by the 14th. I knew there wasn’t a cure but I thought there was lots of medicines to help. I have seen people with severe RA. They have twisted toes and fingers. I’m very afraid of this.

As some others have said, there are effective treatments for RA.  There is not a cure, and there is no way to reverse existing damage, but there are a number of treatment options that reduce or eliminate inflammation - and thus pain - and halt progression of the disease.  I have been on biologic / anti-TNF therapy for 17 years and I live a very full active life.  I run 5 miles a day - and more when training for 1/2 marathons.  Unless I am experiencing a rare flare up, most people have no idea that I live with inflammatory arthritis.  Don't let random - incorrect - statements on the internet scare you.  Find a rheumatologist you like and trust and listen to them.

 

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I have a dear friend who was given an uncertain diagnosis of either rheumatoid arthritis or lupus, which present similarly and which have similar lab results. Both are difficult to diagnose. Her rheumatologist told her they would treat it the same regardless, since both are auto-immune conditions and are first-cousin diseases. She is doing pretty well after a period of trial and error with the medication, and also does water therapy and massage. Unfortunately, she had to quit working, tires easily, and has to rest often, but otherwise her activity is not restricted. No cure, but effective medical management is possible.  I know someone who has lived with lupus for 40 years and has escaped kidney damage and some of the other common ravages of this disease. I was diagnosed diabetic in 1991 and so far have no damages. To all of you facing these conditions, be encouraged!

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I wish I hadn’t read that...... They think I have it. RA. I am on a medicine now that is helping with the pain. They did more blood tests and I should have an answer by the 14th. I knew there wasn’t a cure but I thought there was lots of medicines to help. I have seen people with severe RA. They have twisted toes and fingers. I’m very afraid of this.


There are effective treatments for controlling the inflammation that comes from autoimmune arthritis. Early treatment has allowed me to keep working and enjoying life for the past two decades. It’s not always perfect, but it’s doable. Wishing you the best as you seek treatment.
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17 hours ago, Jaedzia said:

I wish I hadn’t read that...... They think I have it. RA. I am on a medicine now that is helping with the pain. They did more blood tests and I should have an answer by the 14th. I knew there wasn’t a cure but I thought there was lots of medicines to help. I have seen people with severe RA. They have twisted toes and fingers. I’m very afraid of this.

I have a sort of shirttail cousin to RA. There are medicines to help: Methotrexate, some NSAIDs and biologics. MTX is available in oral and injectable form. Some people can handle the oral form; I couldn't. I injected MTX once a week for 13 months. I then moved to Humira, which I injected every two weeks for about nine months and then once a week for five years. I tried and failed NSAIDs like Arava. There were two I wasn't allowed to try, one because I have a family history of macular degeneration and cataracts. I'm injecting Cosentyx every other week now.

Biologics are expensive. Thank God for health insurance and drug company assistance programs.

Does it give me pause that Glenn Frey of Eagles died of complications from RA and diverticulitis? it does. But between no life because I don't inject biologics and being able to go to the odd concert, continuing to work and be a wife to my husband while injecting biologics, I chose the biologics. At the same time, I've included some natural "healers": turmeric and fish oil among them.

I'm not going to lie. Imaging shows damage to my c-spine, t-spine, lumbar spine, both shoulders, both knees, my left Achilles, both feet, my knees, my right hip and my hands. The damage I can attribute to progression is to my lumbar spine. Most of the rest is because I wasn't diagnosed and treated until six years in.

I absolutely trust my rheumatologist and his PA. In fact, my rheumy was part of a study which found that people on biologics generally do better when they continue with biologics when they have minor surgeries than when they don't. I also have a pain management team. I like the PA. My doc knows her stuff but she and I have to have a conversation about giving me more information during procedures.

Edited by sixcatatty
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2 hours ago, sixcatatty said:

I have a sort of shirttail cousin to RA. There are medicines to help: Methotrexate, some NSAIDs and biologics. MTX is available in oral and injectable form. Some people can handle the oral form; I couldn't. I injected MTX once a week for 13 months. I then moved to Humira, which I injected every two weeks for about nine months and then once a week for five years. I tried and failed NSAIDs like Arava. There were two I wasn't allowed to try, one because I have a family history of macular degeneration and cataracts. I'm injecting Cosentyx every other week now.

Biologics are expensive. Thank God for health insurance and drug company assistance programs.

Does it give me pause that Glenn Frey of Eagles died of complications from RA and diverticulitis? it does. But between no life because I don't inject biologics and being able to go to the odd concert, continuing to work and be a wife to my husband while injecting biologics, I chose the biologics. At the same time, I've included some natural "healers": turmeric and fish oil among them.

I'm not going to lie. Imaging shows damage to my c-spine, t-spine, lumbar spine, both shoulders, both knees, my left Achilles, both feet, my knees, my right hip and my hands. The damage I can attribute to progression is to my lumbar spine. Most of the rest is because I wasn't diagnosed and treated until six years in.

I absolutely trust my rheumatologist and his PA. In fact, my rheumy was part of a study which found that people on biologics generally do better when they continue with biologics when they have minor surgeries than when they don't. I also have a pain management team. I like the PA. My doc knows her stuff but she and I have to have a conversation about giving me more information during procedures.

I have Psoriatic arthritis and I've been taking oral methotrexate for nearly 5 years. I'm on 20mg once a week. It's been my lifesaver. I know I'm fortunate to be able to take it, and I'm very glad you were able to find one that does suit you and works ?

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Sorry for getting emotional. I know the OP didn't mean to depress me. I thank everyone for the encouragement. I appreciate it very, very much. I've been depressed for a while about it as I already have hypothyroidism and two hip replacements due to arthritis already. I'm not even 50 yet. Recently because of the pain, I am in I have been through three MRIs. They revealed that my right hip is just fine(but my worse pain is there!), my left hip has muscle atrophy, and my lower back is the real source of the pain in my hips. My lower three discs are simply a mess. I'm now seeing a spine and pain specialist and rheumatologist. I am on a medicine that is meant for lupus, RA, and malaria. The medicine is working. I know I don't have malaria. I have been tested over and over for lupus. Always negative. Before my medicine, my inflammatory markers were sky-high. Now they are back to normal. I saw the results before seeing the rheumatologist(LabCorp has a portal). She has all the MRIs. I'm expecting an RA diagnosis on the 14th. We will see. Thanks again for the encouragement. It has been quite kind of all of you. 

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22 hours ago, kiwi said:

Why does she constantly have to lick the ground he walks on???

Because that’s how she was raised. How else would we know what a godly wife she is and what a great husband she has landed. 

 

E51D9604-3E83-4E42-87CB-3D7ACAE39E4A.jpeg

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1 hour ago, IsmeWeatherwax said:

I have Psoriatic arthritis and I've been taking oral methotrexate for nearly 5 years. I'm on 20mg once a week. It's been my lifesaver. I know I'm fortunate to be able to take it, and I'm very glad you were able to find one that does suit you and works ?

My people! I have Psoriatic Arthritis also. I've had Psoriasis since I was six years old. Family history of psoriasis and other inflammatory disorders. Yay me.

1 hour ago, Jaedzia said:

Sorry for getting emotional. I know the OP didn't mean to depress me. I thank everyone for the encouragement. I appreciate it very, very much. I've been depressed for a while about it as I already have hypothyroidism and two hip replacements due to arthritis already. I'm not even 50 yet. Recently because of the pain, I am in I have been through three MRIs. They revealed that my right hip is just fine(but my worse pain is there!), my left hip has muscle atrophy, and my lower back is the real source of the pain in my hips. My lower three discs are simply a mess. I'm now seeing a spine and pain specialist and rheumatologist. I am on a medicine that is meant for lupus, RA, and malaria. The medicine is working. I know I don't have malaria. I have been tested over and over for lupus. Always negative. Before my medicine, my inflammatory markers were sky-high. Now they are back to normal. I saw the results before seeing the rheumatologist(LabCorp has a portal). She has all the MRIs. I'm expecting an RA diagnosis on the 14th. We will see. Thanks again for the encouragement. It has been quite kind of all of you. 

I'm hyperthyroid (Graves disease). Lower back pain is awful. I spent the summer in pain and nearly going nuts. This past Wednesday, I had a Medial Branch Block in my lumbar area on the way to Radio Frequency Ablation of the nerves in my lumbar spine. I hope you find relief in whatever form that takes.

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10 minutes ago, sixcatatty said:

I had a Medial Branch Block in my lumbar area on the way to Radio Frequency Ablation of the nerves in my lumbar spine.

I've had 2 blocks and one RFA and none of it did any good. There's nothing else that can be done unless I have a surgery to fuse L-3, 4 & 5. I've heard BAD things about it so it's not getting done. I don't dare go to a doctor for the pain in my hip right now, it'll be blamed on "grief". It's not grief, my hip fucking hurts like a bitch, but I know how MD's see women, especially one who just lost her husband. I don't bother taking anything for the pain, I just grin and bear it. It's pissing me off because it's limiting my life but...ya know?

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Sorry for getting emotional. I know the OP didn't mean to depress me. I thank everyone for the encouragement. I appreciate it very, very much. I've been depressed for a while about it as I already have hypothyroidism

I am on a medicine that is meant for lupus, RA, and malaria. The medicine is working. I know I don't have malaria.


It is easy to become emotional and discouraged. Most of us with autoimmune arthritis have other autoimmune disorders, too. It can be overwhelming. I remember a friend telling me after my PSA diagnosis that I would never be well again. It’s true in the broadest sense, but it’s not how I am choosing to look at it. I do everything I can to stay healthy and active. I have the hardest times when I have a medication change that moves it along the progression, like when I moved to biologics. It reinforces the knowledge that I have a progressive disease. I’ve allowed myself to indulge in some retail therapy after those kind of appointments. It helps.

You mentioned malaria. Anti-malarials like Hydroxychloroquine (Plaquenil) have additional benefits that work in autoimmune suppression. It worked really well for me for a long time. It’s not too far along the progression. Hopefully it will be the ticket! Be kind to yourself and know that there are others who care and empathize with you.

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2 hours ago, feministxtian said:

I've had 2 blocks and one RFA and none of it did any good. There's nothing else that can be done unless I have a surgery to fuse L-3, 4 & 5. I've heard BAD things about it so it's not getting done. I don't dare go to a doctor for the pain in my hip right now, it'll be blamed on "grief". It's not grief, my hip fucking hurts like a bitch, but I know how MD's see women, especially one who just lost her husband. I don't bother taking anything for the pain, I just grin and bear it. It's pissing me off because it's limiting my life but...ya know?

I'm hoping for right at a year's worth of less pain than I had this summer--just enough to get me to retirement December 31, 2020. The neurosurgeon said he didn't see any instability in my spine so we're not talking fusion yet. I doubt I ever will for the same reason you have.

I know it's not much but ice does help me a bit.

The reason I waited so long to get diagnosed and in treatment is being treated like "one of those females." Doc told me to lose weight. I know *something* was wrong; you just don't have the crushing fatigue like I had when you only need to "lose weight."

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40 minutes ago, sixcatatty said:

The reason I waited so long to get diagnosed and in treatment is being treated like "one of those females." Doc told me to lose weight. I know *something* was wrong; you just don't have the crushing fatigue like I had when you only need to "lose weight."

If I had a nickel for every time I was told that whatever problem would fix itself if I lost weight. It also doesn't help when you have mental health disorders on top, then add my husband died 2 months ago and they'll blame all the pain on "depression", "grief" whatever the think they can get away with. Someday I'll gather up the courage to see if some of these things can be fixed. I'd love a night of sleep that isn't broken by pain. 

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2 hours ago, feministxtian said:

If I had a nickel for every time I was told that whatever problem would fix itself if I lost weight. It also doesn't help when you have mental health disorders on top, then add my husband died 2 months ago and they'll blame all the pain on "depression", "grief" whatever the think they can get away with. Someday I'll gather up the courage to see if some of these things can be fixed. I'd love a night of sleep that isn't broken by pain. 

This is so completely true, I have ocd, asd, and depression, and learned about two years ago that my body doens’t produce enough vitamin D and I’m anemic. Well to get that diagnosis I had to go through months of severe leg pain and exhaustion and having everyone say “maybe it’s just your meds need adjusting”. It made me want to rip my hair it because I knew it wasn’t that, but it still took over six months to get a CBC and vitamin d test. When I learned what it actually was my counts were so low my doctor was shocked I could stand up. 

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This has actually been bothering me all day, his inclusion of "combating the opiate crisis". As I've mentoned before a number of times, I am a recovering addict, so I'm pretty sensitive to these things  Have the Duggars or their ilk ever really made addiction a talking point? Beyond the general fundie speak that is.

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9 hours ago, sixcatatty said:

My people! I have Psoriatic Arthritis also. I've had Psoriasis since I was six years old. Family history of psoriasis and other inflammatory disorders. Yay me.

I'm hyperthyroid (Graves disease). Lower back pain is awful. I spent the summer in pain and nearly going nuts. This past Wednesday, I had a Medial Branch Block in my lumbar area on the way to Radio Frequency Ablation of the nerves in my lumbar spine. I hope you find relief in whatever form that takes.

@sixcatatty hugs!! I also have RA and Ehlers Danlos, yey us! Ive had psoriasis since I was 15 and the PSA was diagnosed 6 years ago. Mother, daughter 1 and son 1 have psoriasis also. I pray they do not get the PSA.

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10 hours ago, feministxtian said:

I've had 2 blocks and one RFA and none of it did any good. There's nothing else that can be done unless I have a surgery to fuse L-3, 4 & 5. I've heard BAD things about it so it's not getting done. I don't dare go to a doctor for the pain in my hip right now, it'll be blamed on "grief". It's not grief, my hip fucking hurts like a bitch, but I know how MD's see women, especially one who just lost her husband. I don't bother taking anything for the pain, I just grin and bear it. It's pissing me off because it's limiting my life but...ya know?

Sexism in medicine sucks so much! I understand where you’re coming from. One idea (that you might have already had yourself, but I’ll say it anyway): Why don’t you see a doctor who doesn’t know you recently lost your husband? This way, you can get treated for your pain without giving the doctor all kinds of private details that are non of his business! 

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12 hours ago, MathQueen said:

Hydroxychloroquine (Plaquenil)

Yes, that is what I am taking. Funny story on that is the doctor warned me about a rare possible eye problem with this medicine. Within a week, I had a fuzzy dot blocking part of my vision in the left eye. I ran to my eye doctor who did a test and told me to stop worrying. I had a "floater" that would take a few months to move to the edge of my eye and dissolve. 

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13 hours ago, FluffySnowball said:

Sexism in medicine sucks so much! I understand where you’re coming from. One idea (that you might have already had yourself, but I’ll say it anyway): Why don’t you see a doctor who doesn’t know you recently lost your husband? This way, you can get treated for your pain without giving the doctor all kinds of private details that are non of his business! 

I'd be afraid to disclose my psych meds...and those can have some nasty interactions with other meds...so...damned if you do, damned if you don't.

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@IsmeWeatherwax, did you see that most recent season of RuPaul's DragRace?  The winner of the season was Yvie Oddly who has Ehlers-Danlos.  She makes use of her hypermobility in her drag performances.  She does have to be careful though as she is so easily injured and, in fact, was during one episode.  One thing I loved about her was that she just was not talking any of Silky Nutmeg Ganache's shit and man, was there plenty of it!

(Silky was another contestant and I have absolutely nothing good to say about her. She was terrible.)

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@PennySycamore no I haven't but I know my daughter loves it! I'll have to ask her if she saw that one. People do use the bendy joints and stretchy skin for exhibition purposes and end up badly damaged at a very young age, its very sad. 

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