Hello and welcome-- 9 to 10 years of searching, what a journey!
I also get those bumps. My LLMD calls them "papules" and I believe he associates them with the Bartonella co-infection. I get them on my face but mostly on my forarms, chest, and legs beneath the knee.
Unlike regular acne, these bumps have a very hard white inside that doesn't "pop" and is also very slow to heal. Even after the bump goes down, a red mark persists for months. I've had these on my arms consistently for years so that I forget that they should not be there. They don't itch or otherwise both me.
For me, I sometimes will get a breakout when many new ones will appear all at once. They don't tend to come along one at a time but in groups.
I don't really understand what they are, but can relate that I get them as well.
Thanks for the reply,
Yes it has been quite a journey, more like a journey through hell to be honest.. But still have hope for getting better.
yes these bumps for me have never gotten better till I started treatment 5 weeks ago. I have noticed that they are getting smaller.. It is like a deep acne and yes they don't POP.. kinda gross subject but it is a symptom I guess. I'm still trying to grasp all of this even though I have been sick for so long have to change gears from fibro to which there is no cure LOL... wonder why, DER cuz it's lyme... to a treatment plan. Which is making me sicker for now..
.. I am herxing still but seems to be getting a tiny bit better. I did to much yesterday and paying today. I find If I get to tired I pay dearly the next day...
Again Thank you..
Yes, the labels of fibromyalgia and chronic fatigue are frustrating to me as a patient. Most doctors consider the two to be "syndromes," which really just means they are names for a certain collection of symptoms. That is, as you note, a diagnosis of fibro doesn't cite any cause or suggest any treatment.
Because I deal with nerve/muscle pain, and also lots of fatigue, I have fibro and CFS. But those labels don't offer any clue as to WHY I'm in pain and fatigued, or what the heck to do about it. So I was relieved when I found my Lyme doctor, who actually offered a possible cause and, better still, a solution to my nightmare.
I also herxed a lot, especially at first. And it is very true that sometimes extra activity one day makes for a tough next day. For me I'm happy that the situation is improving: I still might "pay" for over-doing it, but now the payback is only a day, instead of a week. I'm a work in progress but when I look back at myself before treatment, it is apparent that I'm on the right track to overcoming my symptoms.
I hope you have better days soon ahead.
Good for you !!!.. How long are you into treatment.. I'm only on my fifth week. Still herxing. But have noticed a tiny improvment with that. It's funny once I started treatment my pain level went down.Still there but not as intense.. The fatigue in unrelenting. People who are healthy have no idea what fatiuge is apposed to being tired.. I have given up trying to justify my self.. I only do what I can and if I have a full day, I make the needed changes to get through so the next day is not as taxing. After being sick for so long..I am a bit impatient for the turning the cornor event.. LOL...I have not made plans for this summer for the usual things, like a garden and flowers as I don't feel I have the energy to do it so rather get frustrated with it all I'm taking a break for this year and hope that next will tell a different story... fingers crossed..
Thank's any info or guidance is much appreciated at this point ...:)
I've been treating for about two and a half years. I hope that long time doesn't sound too discouraging; everyone is different and some get better faster than others.
My issue is that I'm *partially* better, but finding the route to the finish line is proving difficult. I definitely have responded well to treatment, though for about the first nine months I felt pretty awful with Herx reactions.
You are so right that folks just don't understand fatigue unless they've experienced it. I confess that before I got sick I myself lacked compassion. So I payed dearly to earn my compassion!
It is difficult to make plans when dealing with complex chronic illness, but do try to do things you enjoy when you feel up to it. It is very easy to get depressed with this illness, so any good days you have try to embrace and hold on to the feeling.
No the time frame is not discouraging. i have been prepared by my LLMD. and have researched and read a lot about lyme.. so nothing shocks me.. Just not getting my hope up to high, I can't seem to grasp being well again, I have forgotten what it is like to feel good on a daily basis.. One day at a time..
It is hard for people to be compasionate especially those who are healthy as they don't have a clue what illiness is.. besides the occasional days of not feeling well and bouncing back in a day or to.. We loose site very easily.. I to am guilty of the same. this journey has been a real learning experience for me.. If I reach the other side what a treasure of experience I have studied for.. LOL.. I think I have been a bit lucky as I am not as sick as some I have read about or seen,, The documentary Under our skin really made me understand just how debilitating some really get.
one thing with my self is that I'm a loaner it does not bother me to not have people around.. I rather it that was for now.. I just don't have the energy to put out the friendship. You have to be a friend to have a friend.. I have always been the giving friend.. listening to others problems and helping giving of my self way to much.. Then when i got sick those who ihad been there for were to self absorbed to really listen to me and how sick I was. So I moved on best for me. I don't have the desire or the energy to put much effort into a one way street. Myhubby is my friend and he is the only one who know's what I have been through and understands.. Well in to 6th week of treatment I have noticed very suttle change.. Like I felt like getting up this am... Very unusal.. but I did in deed savor it.. not long into the day and already feeling tired..
Are you doing some detoxing?? It has been a bit overwhelming but I'm relly trying to do the most I can with the recomendations of my LLMD... hang in there.. Well beat it..