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What am I actually supposed to be doing to get better?
I’m having a hard day. I *think* that I might be getting better (my resting heart rate has been decreasing over the past two weeks, I seem to have less tachycardia in response to mild exertion, and I haven’t had a classic PEM crash in two weeks), but I honestly don’t have any idea what I may or may not be doing that is helping. I did spend all of last week in bed sick as heck with a cold, so maybe all that rest helped? I am driving myself crazy trying to figure out the pacing “sweet spot” of not pushing too much vs. being so inactive that deconditioning becomes more of a factor than the actual Long Covid. I am so scared of another crash (the last one lasted two full weeks and was awful), but I am also wondering how I will know when it’s okay to push a little more, start to try to get back to “normal”.
My doctor is supportive in the sense that she confirmed that I do have Long Covid, but I really have had no other guidance at all in terms of what I am supposed to be doing. She said that there are no treatments, so I have essentially been left to recover without any guidance on how it will look and feel.
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Wow, Gerdi, I find this infuriating. We can't spend time with doctors who are unhelpful and unwilling to learn new stuff, we don't have the energy for it. What he did is called "medical gaslighting" -- you can look it up -- others on this board have had similar experiences. What he meant to say is "I don't know what this is, so let's pretend it doesn't exist." Please keep reading others' experiences similar to yours. I'm an LCSW with many years of experience treating depression/anxiety/etc., and I find his uncaring approach to be dreadful. If he's not a specialist in mental health treatment and believes you're depressed, he should have referred you to a mental health specialist for a proper diagnosis. BTW, most of us are suffering from a very depressing life circumstance -- we have a debilitating illness that so far has not been handled well by the health care industry, nor do we have much optimism about helpful treatments in the near future. Even diagnosis (as you've discovered) is hard to come by. It is depressing... but it' not all in your head; it's all over your body. Doctors need a lot more education in this matter; my PCP is grudgingly learning from me, not that she's had much to offer in the way of help, but she has finally written the diagnosis of LC into my records after all those tests came back "normal." Good luck to you; you'll learn a lot from others in this support group; you're not alone.
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3 ReactionsHi,
Unfortunately from my experience all the medical community knows is to treat the symptoms. I have dealt with this poison for over 2 years now. I know what foods cause inflammation which leads to the fatigue as well as any exertion. I am now taking low dose naltrexone, gabapentin and my med for ADHD, omega 3 fish oil, trazadone for sleep and a magnesium supplement. I can say that the low dose naltrexone helps so much, especially with the hopelessness I feel sometimes, as well as just my body in general. I see a holistic doctor now as well as my PCP. It seems that medication is necessary to function. I also try not to eat sugar or a lot of salt. It is as if I have experienced several autoimmune diseases through the last two years but they seem to pass, all EXCEPT the fatigue and inflammation. I forgot, I am also on a low dose blood pressure medicine. This is a terrible virus. I hate that we all seem to have gotten this. I know that if I feel ok and walk or do more activity physically, I pay for it the next day. Hang in there everyone.
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4 ReactionsThanks for this! I'm curious, does the LDN help you with the fatigue/PEM symptoms?
It helps when I take it in the morning. I will feel ok during the day and be able to do more physical activity than when I was not taking it. The issue is that I wake up with the PEM symptoms. That might be because I haven't tried the LDN at night. I may try taking a dose before I go to sleep and see if it makes a difference. For instance, this morning I woke feeling pretty bad but it also depends on what I eat. I can't decide if the fatigue/PEM is worse due to inflammation from what I ate (usually salty or sugar) or due to the virus. I know that the LDN helps me function so much better during the day. I may take a dose before bed tonight and let you know how I feel in the morning.
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1 ReactionYour Neurologist is absolutely WRONG to say LC clinics offer only SSRI! Actually my LC doctors are the only ones who have not offered SSRI. They understand that this is NOT all in my head, but is an actual physical condition that is causing me such distress that YES, I do feel depressed, but it is not my root problem.
I’m about to begin LDN treatment and I sure hope it helps me.
Good luck to you.
Yes, Thank you!
diverdown,
I’m about to start LDN treatment and wonder how you adjusted when you first started? I’m reading some people have a rough go of it before getting adjusted.
I already feel so bad, and if it is a hard adjustment with nausea and nightmares etc. etc. I worry I won’t be able to stick with it.
I have been unable to adjust to eight different SSRIs so I figure I’m pretty sensitive.
The LDN targets the receptors in the brain that produce dopamine. Research has shown that it attaches to the receptor producing the dopamine and then that is supposed to trigger the brain to produce more or it's own dopamine. I have not had any side effects except a little constipation. I am a recovering alcoholic/addict, so my tolerance to medications might be different. I would not recommend going above 3 mg twice a day and perhaps just start with 3 mg and see how you adjust to it. It is not like SSRI antidepressants. I have been on many and the side effects from those can be hard to tolerate. This is just my opinion about LDN and my experience taking it. I go to a holistic doctor and they have their own pharmacy. If you have that access in your area, I would suggest that but if not, I know that other doctors prescribe LDN. I hope it works for you. It has helped me function better during the day. I wake up feeling like crap, but I am improving over the last two years. The post exertion malaise and the fatigue/inflammation are the worst but once I take the medicine, I feel much better. I haven't found that anything helps with tinnitus. It comes and goes. I hope if you try it, it works for you.
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1 ReactionThank you so much for that speedy reply!
Yes, it is on order from a compounding pharmacy. I should have it in a few days. My dosage starts at 1mg at night. If I do ok (no bad side effects), increase weekly until I feel improvement, or reach 5mg.
Fatigue is not my major issue. I have sensory issues of tinnitus, hyperacusis, eyes very light sensitive, painful skin, and of course some depression.
My doctor hopes to get my hypersensitivity turned down and help with mood.
I’m hoping I can tolerate and give it a good try. I understand it can take several weeks to “kick in”.
I have the same problem. I cannot take SSRI medication at all. I want to try LDN but I’m worried I’ll end up disappointed because of side effects. My main side effect is bad migraines from SSRI meds. Is anyone taking LDN who also is a migraine sufferer?