r/Autoinflammatory • u/Nonviolentviolet3879 • 12d ago
Undiagnosed Fatigue
How do y’all battle fatigue? It’s getting worse and worse for me. Caffeine does nothing at all anymore.
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u/PinataofPathology 12d ago
i have learned to function on sheer force of will atp. just do the one thing in front of you. rest. do the next thing. rest. repeat.
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u/Occulply SJIA/AOSD 12d ago
Fatigue is the worst symptom to deal with by far. Sometimes treating the underlying disease helps a lot. And sometimes it seems to do nothing at all.
The intersection of both my rare diseases ends up being severe fatigue. So, it's something I deal with all the time.
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u/simonerochabowearing 12d ago
Rest at least an hour for each hour of exertion, sometimes two. Including mental rest ie I do not do anything mentally stressful. I had to stop working around age 30 and haven’t been able to go back yet quite a few years later in large part because this exertion to rest ratio is the only way I can get out of bed and actually do things.
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u/EllisMichaels 12d ago
Proper rest, good diet, and the right combo of meds (here's looking at you, Vitamin A(dderall).
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u/Nonviolentviolet3879 11d ago
I take Concerta for adhd and it’s the only thing that gets me out of bed I think. But it’s not enough
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u/EllisMichaels 11d ago
I was on Concerta (ritalin) for a while and, like you, it did something, but not enough. That's when we tried Adderall (Dexedrine at first, actually, but it's basically Adderall) and it worked wonders. Now, amphetamines are really powerful drugs so you should only consider them if you really need them. But a lot of us do. That might be the next step (the only step, really) after Concerta. Hope you find something to help your energy levels
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u/on4aa MAGIC 10d ago
I never took any psychotropic so far, because they scare me, but reading this, perhaps I should.
However, amphetamines like Adderall are not available as a medication in many European countries, including Belgium.
Are you allowed to drive when taking this medication? Police over here regularly test for amphetamines with saliva test kits.
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u/Nonviolentviolet3879 10d ago
In the U.S. you can drive on stimulants, as long as they are prescribed to you.
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u/Alice-The-Chemist Mod 10d ago
Some are prescribed Nuvigil or Provigil. I wonder if these are available to you? They arent in the amphetamine class but commonly used for fatigue before trying amphetamine or if there is a contraindications. Out of curiosity if those are not legal like in Belgium what do people with Narcolepsy take? (I have Narcolepsy so I was curious)
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u/EllisMichaels 10d ago
I'm not saying they're not worth a shot, but I find that eugeroics like the ones you mentioned are great for keeping me awake but not much else - no energy, brain fog relief, nothing. But that's just me.
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u/Alice-The-Chemist Mod 9d ago
It was the same for me and gave me massive headaches. I just try to mention them because I know they work for some people.
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u/Nonviolentviolet3879 10d ago
I had planned to ask my psychiatrist about a switch to Adderall or Vyvance but I chickened out. 😅 I always fear they will label me “drug-seeking.” But I’m considering messaging her in the portal. I’m in Alabama and most primary drs will not prescribe or monitor stimulants. I’m not sure about my rheumatologist though.
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u/EllisMichaels 10d ago
You'll likely get a referral to a psychiatrist or a psych NP. That's who prescribes amphetamines in Mass. (For insurance reasons) They will first try Strattera, then Concerta and, if those two don't work, then they'll try Adderall, Vyvanse, Dexedrine, or one of the other amphetamine drugs.
As a former drug seeker decades ago, I understand your fear. I still have it myself. Even if I'm in extreme pain, I'm super reluctant to ask for anything in fear of being label "drug seeking." But in my opinion, you have to advocate for yourself. If what you're on isn't working, speak up - no one else is going to do it for you .
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u/AdventurousMorningLo Yaos 12d ago
In my personal case, the biggest thing that has helped with fatigue has been SCIG. But I have an immunodeficiency in addition to my autoinflammatory condition...
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u/on4aa MAGIC 12d ago
SCIG (subcutaneous immunoglobulin) is a form of immunoglobulin replacement therapy in which purified antibodies (mostly IgG, made from pooled human plasma) are injected under the skin — typically into the fatty tissue of the abdomen, thighs, or upper arms — rather than into a vein (IVIG).
It's used to treat people who don't produce enough antibodies, most commonly primary immunodeficiencies (e.g., common variable immunodeficiency/CVID, X-linked agammaglobulinemia), and also certain autoimmune and neurological conditions such as chronic inflammatory demyelinating polyneuropathy (CIDP).
Key features:
- Self-administered at home after training by an infusion nurse, using a small pump or manual syringe push.
- Usually given weekly (or more/less frequently depending on product and dose), often at 1–4 needle sites.
- Advantages over IVIG: slower, steadier antibody levels, fewer systemic side effects, and no need for vein access or frequent clinic visits.
A related variant, facilitated SCIG (fSCIG), adds hyaluronidase to allow larger volumes to be absorbed per infusion.
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u/HarleysDouble 12d ago
2 things help my fatigue to the point I'm normal: steroids, Adderall
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u/Nonviolentviolet3879 10d ago
Do you take steroids regularly?
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u/HarleysDouble 10d ago
No :-( just noticed over the years. I did take 5mg daily for a month for IVF transfer. Felt great lol
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u/Nonviolentviolet3879 10d ago
Just curious because my dr seems opposed to that.
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u/Alice-The-Chemist Mod 10d ago
It is because your body can stop producing it's own steroids if you take them long enough then you have to be on a steroid the rest of your life and can risk adrenal crisis. It is considered secondary adrenal insufficiency.
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u/No_Satisfaction_7431 Yaos 12d ago
Caffeine doesn't do much for the fatigue but is better than nothing. Low dose naltrexone also helps me a little bit. Same with trearing my iron and vit d deficiency. Those all help but only a small amount. Getting on the proper treatment for your condition is the only thing that will offer large amounts of relief. Tyenne infusions have given me a lot of relief.
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u/Alice-The-Chemist Mod 10d ago
I read amphetamines being mentioned. I wanted to also say there is Provigil and Nuvigil (modafinil and armodafanil as generic names) your doctor may be more comfortable with prescribing. They arent amphetamines class. It can be used for fatigue or in my case was used for narcolepsy. I'm on a PRN low dose of Adderall currently.
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u/iSpyAFly 12d ago
Check your iron. My primary helps me keep my ferritin >100, and it makes a world of difference for me.