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Autoimmune or other question

deena04 posted 5/27/2020 21:45 PM

We know I have some sort of an autoimmune issue. For the last week or so, I am noticing different symptoms than I have ever noticed. My limbs feel like they are achy and have pins and needles. When I wake in the morning, my feet just hurt to walk on until I get them awake. My hips throb. Iím not overweight so I donít think itís a matter of carrying excess on my joints. Any ideas or thoughts? I donít go back to my rheumatologist until July and I donít really want to make an extra appointment if nothing can help. My hands also have moments of not wanting to work right. It is becoming a chronic pain issue. Iím active and itís driving me crazy.

[This message edited by deena04 at 9:48 PM, May 27th (Wednesday)]

tushnurse posted 5/28/2020 09:43 AM

Call the Rhuem. You need labs, and probably at minimum a steroid taper to get things under control. You may not need an extra appt, but you need care.

I have had 2 flares since late Feb, and it seems that things still aren't "under control" I get an injection in a bad ankle next week, hoping that will quiet things down. But do NOT just wait it out. Pain is a symptom of damage being done. I know that is a hard thing to accept, but it is true. It's the disease (whatever you have) way of letting you know things aren't good.

deena04 posted 5/28/2020 20:07 PM

Thanks. I called today. They are catching up from non-emergency situations during covid, but squeezing me in.

Marie2792 posted 5/28/2020 23:26 PM

I also have a yet-to-be-diagnosed AI disease. I know inhave fibro and typically if your pain is symmetrical itís fibromyalgia which I do know I have and am beating treated for. I also had neuromas in my feet as a result and so had special orthotics made. I get those electric shock feelings everywhere in my body. And I do mean everywhere. I hope you get some info soon.

k8la posted 5/29/2020 00:00 AM

I go to a dual disciplined doc who has both the MD credentials and naturalist physician credentials. He just put me on an intermittent fasting regimen to reduce inflammation. That involves one 3-day water-only fast every month then the rest of the time 16 hours fasting/8 hours for meals, which are no sugar, limited simple carbs, and high fiber fruits and veggies -which means mostly vegetables, clean proteins like nuts, fish, chicken and seeds. I'm taking vitamins and a really good probiotic-prebiotic-phytobiotic supplement. We're focused on gut healing which is where the immune system starts. That's why the fasting is helping me. I've noticed I've had less pain in the last month since he put me on this regimen.

The goal is to push this autoimmune reaction into remission, which A strict diet has put me into before. I wasn't doing intermittent fasting but the foods that contributed to my symptoms were excluded from my food choices - I just didn't know I was sensitive to those specific foods.

deena04 posted 5/29/2020 12:22 PM

You guys are awesome. I have also seen a functional medicine practitioner. She put me on better vitamins as well and did some testing on my food sensitivities. We are in the middle of making changes on all of that. Itís just lately everything is misfiring. Has anyone ever technically recovered with management meds and
life style?

deena04 posted 6/16/2020 11:03 AM

My MD says normal enough for now. My integrative health practitioner says not. Every joint in my body aches today. Most have been aching for weeks, but today is really bad. I looked at the steps in my house and thought no way! Any suggestions on what this could be and how to get my MD to take it seriously? MD says degenerative disc and degenerative joint. I am making the nutrition changes my integrative practitioner suggested and hoping that helps. My positive speckled ANA was 80 last year, now I think she said over 500 (Iíll look and check). I am still making myself walk and do yoga. Help?!

tushnurse posted 6/16/2020 11:58 AM

Get a Rheumatologist. Many many many people have seronegative (blood work normal) arthritis.
I am one of these people. I had the first Rheum I saw tell me nothing was wrong w/ me except I needed to loose weight, because labs were good.
But the second one I saw (who I knew was good) looked at my hands and feet and said, you definitely have disease, doesn't matter what the labs say you need meds.
I started an NSAID and DMARD that day, with great results for about 8 years. Pretty much stopped this thing in its tracks. I have had a bad 6-8 months, w/ drugs not working and am actually just starting my second biologic, and have had 2 flares where every joint is hurting, and swollen, red and painful. When this happens sometimes you need steroids to calm everything, and if steroids work, then you definitely have an inflammatory process happening.
Currently after over 15 years with this disease I have several fingers with nodules and joint changes, and a bunion forming on my right foot, which is still too early for surgery, but hurts to even look at let alone touch.

Keep up w/ the diet changes, and also try to decrease stress as much as possible, which means turning off the news for me. Also be kind to your body get a solid 8 hours of sleep a night. Rest when you need to. Make sure your Vitamin D levels are where they need to be and that you are taking a Super B supplement. It helps more than you realize.

deena04 posted 6/16/2020 13:01 PM

Thank you. I do have a rheumatologist, but Iím not scheduled to see her until the end of July and she does not have any openings before as of now. I broke down and went to my MD to see if he could help in the time being. I also have an integrative health practitioner. I am hoping something will work

tushnurse posted 6/16/2020 15:34 PM

I would encourage you to stop messing your PCP they honestly don't understand the meds or what is needed to manage these issues.

Get set up w/ Mychart or whatever your Rhuem has and connect w/ them that way between appt's. I have a standing order (actually keep one in my med cabinet) for a steroid dose pack for when I flare, she got frustrated w/ me not contacting them when I was having flares, but now that I have real and permanent damage, I no longer see the point in toughing it out. When I flare I usually give myself 2-3 days of clean eating and lots of water to see if things start to settle if not then I start them, notify her, and try to get more than my normal amount of rest. I also will go get massages when the world is functioning. These help when in flare and to keep me loose when I'm not.

I would keep up w/ the yoga, but not the walking especially if you are having issues in yoru feet or legs (Hips knees and ankles). Make sure you are getting nightshades out of your diet, and right now you can also use cherries to decrease inflammation, they are fantastic, and I actually see improvement the month or so that they are good. My husband was actually laughing at me because I have gone through so many already this year.

Also try compression socks, and gloves for your hands and feet they do help, they push the swelling out, and that relieves some of the pain, and don't forget about soaking w/ epsom salts. That always helps me feel less achey.

Hang in there.... it's never fun figuring out how to treat and what you are actually treating. But trust your Rheum, and if you don't find one you can trust.

deena04 posted 6/16/2020 22:59 PM

Thank you tushnurse. He drives me crazy because I was a runner until not very long ago. My body just will not let me do it now. I swim, yoga, and enjoy the walking, but will focus on the other things. My integrative health/functional medicine person is fantastic, but getting the rheumatologist to agree may be a different story. Iíll know next month. I will leave my MD out of the equation from here on out.

tushnurse posted 6/17/2020 08:03 AM

Deena - I only see my PCP for colds anymore. Honestly. My Rheum manages everything else, I also have a pain management Dr that I see monthly (thanks to the Opioid Epidemic) to get my Tramadol Rx. I have taken it daily to keep me moving for over a decade. He will also inject any joint that is causing me extreme issues, this month on the first he injected my ankle, that had been so bad I was hobbling around and considering using a cane on some days.
Now it not longer hurts.
When you have a pissed off immune system, it is a complex thing, you basically have developed an allergy to yourself and the inflammation cascade is a very complex process, if you want to get a better understanding of it pm me I will link you to some good articles. But know they are a cure for insomnia. Anyway there are lots of things we can do to help ourselves, but we have to also allow the meds to help switch off those chemical responses. Homeopathic tx will not get it under control on its own. It just won't.

Like I said, I was on a good combo for me for many years, and was able to actually work out 3-5 times a week, and be really active. However when that combo stopped working it again was like a switch flipped. I have not been able to exercise like I need to for over a year, and have struggled, but my newest med arrived on Monday, so I am keeping positive thoughts and hoping that is stops it in its tracks.

keeping stress and anxiety low is vital to keeping things under control too.

EvenKeel posted 6/17/2020 08:18 AM

I have definitely seen a difference since I started hydroxychloroquine.

I was at the point you are. Many nights I would just cry with pain and frustration at my body's rebellion against activity!

Although my numbers definitely do show the inflammatories but they are unable to fully classify my disease so I am in the UCTD (undiff. connective tissue disease) bucket for now.

My dr said I am actually lucky (?) because many folks have such bad pain but their numbers do not 100% show it. Sounds like that might be were you are falling.

Hope you Rheumy can help you asap!

tushnurse posted 6/17/2020 12:32 PM

EK - I took that med for 8 years or so and was pretty much in full remission.
And yes it is incredibly frustrating to not have a positive marker, or blood work that you can point at and go that's it, that is the problem, you need X medication. Unfortunately these autoimmune diseases don't cooperate in that fashion.

Luckily for me my Rhuem and her NP are both incredibly supportive, and knowledgeable.

WhatsRight posted 6/18/2020 10:11 AM

Brief t/j...

How did y'all decide you needed a Rheumatologist?

I have many of the symptoms you have mentioned. Also, my PCP has told me I have fibromyalgia, but I haven't done anything about it because I am very shy about medication.

How did you know you it was time to see a specialist?

tushnurse posted 6/18/2020 10:19 AM

Well WR I knew I was in far too much pain for what is normal for a 30yo.
I also had joints that would swell w/ use, and terrible stiffness in the am.

I took OTC Ibuprofen at Rx doses for years, before and finally decided I needed to figure out what was going on. Plus my Dad and his mom both have terrible arthritis, worse than just the regular osteoarthritis.

So I saw the first specialist on my own, he did all the blood work and everything was normal, so I was told to lose weight. Mind you at that point I was about 5'6" and weighed in at about 180 so not terribly overweight.

As time went on things worsened, I had to have a knee surgery, told it was worse than expected, nothing sent to pathology though, started working with a new group of Dr's as a CM and found my current Rheum that way. Reading her notes and what she was doing for people w/ similar symptoms to me made me realize I fell into a group of folks called Seronegative Inflammatory autoimmune arthritis. They go back and forth between 3 different kinds depending on my presentation, but she gets it,and definitely believes there is a disease process going on. Plus now almost at 50 my joints are changing. I those lovely RA nodules on my fingers, I have a nasty bunion developing on my right foot, and my back disease is progressing more rapidly than if it were just arthritis.

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