Fatigue still haunts me …

[soxfan]

It’s been a while since I have posted. It’s not that I am better but have been managing the best I can. I took up nature photography because it helped with the stress of having this illness. I enjoy it and gets me out in nature which is calming.
Most mornings I still wake somewhat unrefreshed but am able to mange most days. I can sometimes even do errands on my own.
I was also recently diagnosed through biopsy with Small Fiber Neuropathy in my calves and feet. The fiber density is basically non existent. The pain at night is intense .
So anyway just recently I have been waking up totally exhausted like I have jet lag or within a couple hours the fatigue/tiredness becomes unbearable and I have to rest in I mean lay on bed for hours. This is pretty devastating since I haven’t felt this bad about two years. I still take the same meds half milligram Klonopin so I can fall asleep. It does keep me asleep all night even with the pain. I use lidocaine patches.
How do you keep your spirits up when suddenly going backwards? I also just had a huge rash on my back so am seeing my Lyme doctor next week. I am going to try and post a photo of it …believe me when I say I did not do this to myself…it is not self inflicted. There are actual welts under the streaks.
I still have no real diagnosis because the doctors say I am a mystery. If anyone has ever seen a rash like this please do you have any idea about it. Thanks

 

[Judee]

I'm not sure but I think that may be what LLMD's call Bartonella Strae. Definitely take that picture with you next week.

 

[soxfan]

That’s what my doctor thinks it is as well…I sent him the photo. Thank you!

 

[Wayne]

Is

I have to rest in I mean lay on bed for hours. This is pretty devastating since I haven’t felt this bad about two years.

Hi @soxfan -- Sorry to hear how your fatigue has gotten so much worse, with nothing apparent that can explain it. My first thought was whether your area might have just installed some new 5G antennas that could be affecting your health. May be worth checking out. Take care!

 

[soxfan]

No there haven’t been any antennas installed here. I am figuring it’s from rash or just having some bad weeks again…who ever knows with this illness.

 

[Wayne]

I am figuring it’s from rash

I broke out with a really, really bad rash in January when I got COVID. What finally started it on the path to getting better was liberally applying a lotion to my whole body every day. It started getting better the same day I applied my first dose; mostly gone in about a week. Here's what worked for me. (good value when buying it by the quart).

Avalon Organics, Hand & Body Lotion, Aloe Unscented, 32 oz (907 g)

 

[Judee]

The fatigue and PEM are the hardest parts of this disease IMHO. I think I could easily deal with all the other things if I just didn't have this "heavy cloak" of fatigue all the time.

I will say that in one of my Lyme FB groups they were talking about treatment helping with fatigue so I hope your doctor visit will lead to your improving. I hope the one you're seeing is a LLMD (Lyme Literate MD).

 

[heapsreal]

It’s been a while since I have posted. It’s not that I am better but have been managing the best I can. I took up nature photography because it helped with the stress of having this illness. I enjoy it and gets me out in nature which is calming.
Most mornings I still wake somewhat unrefreshed but am able to mange most days. I can sometimes even do errands on my own.
I was also recently diagnosed through biopsy with Small Fiber Neuropathy in my calves and feet. The fiber density is basically non existent. The pain at night is intense .
So anyway just recently I have been waking up totally exhausted like I have jet lag or within a couple hours the fatigue/tiredness becomes unbearable and I have to rest in I mean lay on bed for hours. This is pretty devastating since I haven’t felt this bad about two years. I still take the same meds half milligram Klonopin so I can fall asleep. It does keep me asleep all night even with the pain. I use lidocaine patches.
How do you keep your spirits up when suddenly going backwards? I also just had a huge rash on my back so am seeing my Lyme doctor next week. I am going to try and post a photo of it …believe me when I say I did not do this to myself…it is not self inflicted. There are actual welts under the streaks.
I still have no real diagnosis because the doctors say I am a mystery. If anyone has ever seen a rash like this please do you have any idea about it. Thanks

As has been mentioned, i thought bartonella too, especially being out in nature more you are probably exposed to ticks. Hopefully your dr can start treating you for bart early and you can get back to where you left off.

Cfsme is so up and down, not just day to day or week to week but also year by year. 🤞 you get on top of it.

 

[valentinelynx]

To second (and third) the opinion: Bartonella!

 

[soxfan]

Heading to the doctor next week. I have been treated before so I am hoping he has some
New ideas! Thanks all. Will keep you updated !