1. < Autoimmune Diseases

Autoimmune something: Struck with extreme fatigue

Posted by devonsnana @devonsnana, Aug 18, 2020

I know this will be a long read but please bear with me.
In 2014 I suddenly was stricken with extreme fatigue, my body racked with severe pain and strange swelling in the right arm. After fighting doctors until 2018, I was finally sent to orthopedics. Orthopedics, did the initial evaluation and found my tendons and muscles were crystalizing as well as full disc degeneration from C3 to the coccyx. He ordered an ANA panel which came back with a titer of 1:1250 with a nucleolar pattern. He diagnosed me with systemic sclerosis. I was then sent to rheumatology where he reran the ANA panel using a different method which costed me 3800 because the method he chose was not covered by insurance. It came back with dual 1:1250 nucleolar pattern and 1:80 speckled pattern. He said it was fibromyalgia and outright called me a liar and that I was drug seeking. At this point I had not been prescribed anything. He put me on gabapentin 600 mg nightly and said he would see me in a year. Even though it relieved the pain at night, the swelling and loss of use of my right arm continued. In the meantime, my kidney functions decreased and breathing issues started. I also started having blood pressure issues and through all the testing found I had latent TB. I was sent to nephrology, cardiology, pulmonology and infectious disease. Even though I have told all my physicians of the diagnosis, showed them the labs and many scans I am being treated with skepticism. Pulmonology does annual scans which show interstitial lung disease but says that since I am a smoker it is the smoking and cannot be scleroderma. Cardiology which I just fired says it is just all the drugs they have me on and the harden arteries are from smoking. I have a new rheumatologist who is trying but says it is unspecified systemic connective tissue disorder and probably rheumatoid arthritis because of my age. I also have been diagnosed with Hashimoto Disease, peripheral vascular disease, ground glass in my lungs, severe asthma and COPD. I realize I need to quit smoking but at this point, I am allowed nothing for pain and as much as I hate it the nicotine does ease the pain. My medications are many. I am lost to what my next move should be or what direction I should be going or if I should just throw in the towel. There is no quality of life and I need a new direction.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

devonsnana | @devonsnana | Aug 23, 2020
In reply to @susandenise "I also take CBD Tincture or gummy edibles. 300 mg strength for each gummy. Go to..." + (show)
@susandenise

I also take CBD Tincture or gummy edibles. 300 mg strength for each gummy. Go to “cheefbotanicals.com” a highly respected company and get some edibles . They work within 1 hour for me to control most of my pain and the CBD also comeS IN DROPS . So place under your tongue and in minutes you feel better.

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Did you need a prescription for the edibles. and if there is any thc in them then it is illegal for use in my state.

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2 replies
devonsnana | @devonsnana | Aug 23, 2020
In reply to @susandenise "This is exactly how it started for me. I’ve been told almost everything under the sun...." + (show)
@susandenise

This is exactly how it started for me. I’ve been told almost everything under the sun. It’s sickening what these doctors do. I will NOT take gabapentin although it really does help you sleep it will cause severe issues to other organs you really don’t need now so try another sleeping alternative. I have swelling in my lower left leg down to my toes. They look like sausages. I have lost all mobility in my wrists and to turn a page in a book I just find some days I cannot move my fingers. I have had these tests ran also. I am in the same boat you are. I was also told in the ER ( I went because my breathing was so bad it felt like my lungs were stuck together and the pain throughout my body was way beyond their stupid pain level of 10 chart) anyway I see a psychiatrist who has prescribed me klonopin and vistaril for my many mental illnesses on top of all this. I can so relate to you. I also have COPD as I am a smoker also but the nicotine or some toxic chemicals in those cigs really do help the pain. I can’t drive anymore, my vision went from 21/20 to 21/-131 in just a few months. I have severe cataracts. I have osteoarthritis in my spine from my c3 vertebrae in my neck to the middle of my spine where a 3 cm mass was found. I also have been to every specialist and nobody will help me. The findings are there! As with you also. I have decided to just go on until I can’t anymore. I cry everyday. Almost all day. Horrible excruciating pain day and night. I cannot write well anymore nor lift much. I am a farmer so this really put a damper on my life. What is odd is that it came on so fast! I was doing Zumba and my right foot bunion area started to hurt. Thought I did too much of a workout so I tried to continue but I couldn’t from the pain. From day 1 of onset of pain and to where my condition is now has worsened drastically in 11 months. I’m told no matter what I do, what meds someone may prescribe I only have maybe 10 more years to live. I’m in agony. I understand your situation. It’s so bad. These doctors are awful! By the way since we are on the Mayo Clinic site don’t they treat rheumatoid arthritis? I’ll check it out because I’ll seek Mayo out as my next facility. Thank you for your story. Finally I know I’m not the only person who feels like they have the flu 24/7, fatigue, swelling, off the chain pain in EVERY JOINT AND BONE.

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It took over 4 yrs to get a diagnosis but now the fight for proper treatment. The gabapentin helps with the night pain so I can sleep but with nothing during the day the struggle is real. I have been told that I have less than 5 years and less if progression keeps going as it has been. I do not put a grain of salt on their time lines as this is not the first time I was told the end was near and bypassed it totally. I am just tired and frustrated.

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devonsnana | @devonsnana | Aug 23, 2020
In reply to @gingerw "@devonsanna Welcome to Mayo Connect. Here you will find a community of fellow patients, caregivers, and..." + (show)
@gingerw

@devonsanna Welcome to Mayo Connect. Here you will find a community of fellow patients, caregivers, and family members who share their personal experiences, like you have. We support each other, but cannot and will not do medical advice or give diagnoses.

It has to be frustrating to have people doubting you, especially when you are in so much pain! Are you near one of the campuses of Mayo Clinic that you could go there, or a large teaching hospital? Having an autoimmune condition or three, it is often a "guessing game", as your body reacts differently at different times. I know that is how it is for me. I wish I had more answers for you, but I hope that others will step in and give their input.

Please come back and let us know how things are going for you.
Ginger

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Ginger, Thank you. I would never ask for a diagnosis from any online forum. I have dealt with 5 rounds of cancer. Unexplained infections, read my last rights 3 times and died twice. I cannot talk for others but since I have a medical record from birth to date and can show documentation for everything it irritates me that to date, no one doctor has bothered sitting down and going through it to get a full and accurate picture of what is happening. Putting the puzzle together as I am sure all the pieces are there. It takes a lot to push me to seek help and when you do and you get no where it is hard.

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devonsnana | @devonsnana | Aug 23, 2020
In reply to @johnbishop "Hello @devonsnana, I would like to add my welcome to Mayo Clinic Connect along with @fracturedd,..." + (show)
@johnbishop

Hello @devonsnana, I would like to add my welcome to Mayo Clinic Connect along with @fracturedd, @susandenise @peach414144 and other members. Sorry to hear you haven't been able to find a treatment that helps you yet. There are some other discussions you may find helpful.

Nonspecific interstitial thickening with groundglass opacities:
-- https://connect.mayoclinic.org/discussion/nonspecific-interstitial-thickening-with-groundglass-opacities/
Hashimoto's Thyroiditis and IVIG Treatment?:
-- https://connect.mayoclinic.org/discussion/hashimotos-thyroiditis-and-ivig-treatment/
Anyone here who has COPD and TB and was treated at the Mayo Clinic?:
-- https://connect.mayoclinic.org/discussion/is-there-anyone-on-here-who-has-tb-and-was-treated-at-the-mayo-clinic/

You mentioned a strange swelling in your right arm. Is the swelling in the upper or lower part of the arm? Has your doctor suggested any treatment to help with the swelling?

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Thank you. The swelling was first the hand, then moved up to the armpit. With two diuretics, two blood pressure pills, it is now only in the hand. I have one leg that swells also. I have been told so many different things it is almost a game now each time I go to what will it be this time.

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devonsnana | @devonsnana | Aug 23, 2020
In reply to @ellens "I used to take weekly shots of methotrexate for RA. I didn't know it could harm..." + (show)
@ellens

I used to take weekly shots of methotrexate for RA. I didn't know it could harm the kidneys; I just knew it could harm the liver. Anyway, my rheumatologist died and I quit the methotrexate since there was no other rheumatologist in the area (Montana). I was sent to a rheumatologist in Duluth where I now live when my sed rate was found to be very high (normal crp, though). He started me on a low dose of methotrexate tablets and then the COVID came along after a month and I quit the meds since I didn't want to face a pandemic with a suppressed immune system. I don't want to try biologics since they can make one susceptible to lymphoma. What I would like to try is medical cannabis since it apparently has anti-inflammatory effects. After I get a COVID vaccine I may ask for medical cannabis. He could throw me out on my ear, although so far he has been a nice man. Inflammation is dangerous, too. If I could just get my sed rate down I would be happy--the RA is just something I live with and tolerate pretty well. I also have Hashimoto's for what it's worth.

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I am the opposite, I have a very high crp but low sed rate. I am on levothryoxine for the Hashimoto and with the history of multiple cancers will not use biologicals. I did not tolerate methotrexate and am having issues with the new medication Arava. Plaquenil and steroids have proven to be the best so far but because of the failing kidneys they wean me off, try something new then put me back on it. At this point I am willing to chance dialysis and have a quality of life then feeling like crap all the time and no quality of life. At least dialysis can be done at night in your home while you are sleeping.

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devonsnana | @devonsnana | Aug 23, 2020
In reply to @ellens "Have you tried cannabis? What I am looking for is something to tamp down the inflammation." + (show)
@ellens

Have you tried cannabis? What I am looking for is something to tamp down the inflammation.

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I have to see if there is a Mayo clinic near me. I do have insurance but also have to verify that which ever place I go is covered. I have not tried cannabis as it is illegal in my state but at this point and looking at going to my other home where it is legal to try it. Covid just has travel almost impossible right now for me.

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devonsnana | @devonsnana | Aug 23, 2020
In reply to @fracturedd "Dr John Varga from northwestern in Chicago just did a great article on the benefits of..." + (show)
@fracturedd

Dr John Varga from northwestern in Chicago just did a great article on the benefits of medical marijuana for scleroderma patients. I’m sure you could google it.

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I will look him up. Thank you

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ellens | @ellens | Aug 23, 2020
In reply to @devonsnana "I have to see if there is a Mayo clinic near me. I do have insurance..." + (show)
@devonsnana

I have to see if there is a Mayo clinic near me. I do have insurance but also have to verify that which ever place I go is covered. I have not tried cannabis as it is illegal in my state but at this point and looking at going to my other home where it is legal to try it. Covid just has travel almost impossible right now for me.

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Travel definitely is iffy due to COVID. If you do get some cannabis I think an edible form is preferable to smoking just for the sake of your lungs. You can make a tincture. If you need to know how to do that, let me know. The THC is drawn out of the leaves by oil or alcohol (like whiskey). I think with the oil route the leaves need to be cooked in oil for a certain number of hours. There are MJ cookbooks.

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susandenise | @susandenise | Aug 24, 2020
In reply to @devonsnana "Did you need a prescription for the edibles. and if there is any thc in them..." + (show)
@devonsnana

Did you need a prescription for the edibles. and if there is any thc in them then it is illegal for use in my state.

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No you do not need a prescription for the edibles and NO THC at all or I wouldn’t take them. Please try the site I posted earlier or contact the “UPSTATE CBD OIL CLINIC” online. A Nurse practitioner is always there. She will answer all your questions about CBD and it’s benefits . Her name is Renata. She’s wonderful. They ship products for 5.99$. You tell her your problems/afflictions and she will instruct you to the proper dose and if an edible or tincture is better for you and what dose. It really “ saved” me.

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Mentor
John, Volunteer Mentor | @johnbishop | Aug 24, 2020
In reply to @devonsnana "I have to see if there is a Mayo clinic near me. I do have insurance..." + (show)
@devonsnana

I have to see if there is a Mayo clinic near me. I do have insurance but also have to verify that which ever place I go is covered. I have not tried cannabis as it is illegal in my state but at this point and looking at going to my other home where it is legal to try it. Covid just has travel almost impossible right now for me.

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@devonsnana There are three Mayo Clinic Campuses - Minnesota, Florida and Arizona but Mayo Clinic also has a Mayo Clinic Care Network of associated hospitals that also provide excellent care. Here is the page with more information and a number you can call to find out more - https://www.mayoclinic.org/about-mayo-clinic/care-network/members.

Also, if you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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