Post # 1
Hello everyone. Hope you are all having a great day. I post today because I have been diagnosed with Lyme disease. It’s a struggle to say the least. I am on antibiotic treatment but the pain is unbearable. My question is do any of you know anything that I could do to relieve some of that?
I think that one of the reasons it hurts so badly is that no doc would listen when I told them I was bitten by a few ticks at once. One doc told me that it was cellulitis and another told me I was insane. You would not believe how many doctors are ignorant to Lyme. By the time I was able to get a good doctor I was already displaying neurological symptoms.
I have a high threshold for pain but this I cannot take daily. I host hiking tours in my area and hike several miles a day, not now. Now I spend my days dreading the next pain or awful sensation. I’ve never been so inactive in my life and feel lazy. I just want to get back to being me.
Any help would be greatly appreciated
Post # 4
@Glenda_the_good_witch: Is it joint pain your dealing with? My mom actually had to have about 3 months of physical therapy to start feeling better after she was diagnosed with Lyme Disease. She was also put on intense antibiotics. Her doctor told her to take Aleve for the pain. It helped some… It took about 6 full months for her to be back to somewhat “normal”. Not saying that it will take this long for you, just sharing my experience! Hope you start to feel better soon!
Post # 5
@Glenda_the_good_witch: I am so sorry you are going through this. I don’t know much (if anything) about Lyme Disease, but I’m sure there are some bees who do. I recall reading a post where another bee had it…I am trying to remember her name so I can tag her in this post. If I think of it, I will let you know.
Good luck with your recovery. If the pain is that unbearable, I’d recommend talking to your medical professional about safe ways to relieve it.
Post # 6
I am so sorry that you’re struggling with this! I am very familiar with Lyme Disease, and it’s terrible that so many doctors are ignorant about it. I have heard tons of stories of people being told that it’s in their head.
Have you reached out to any Lyme Disease support groups? I strongly suggest you make contact with a group in your area. I would also suggest that you find a homeopathic doc in your area who can complement your “western” medicine. I think homeopaths do a better job of listening to their patients and helping them manage pain.
It sucks that you are dealing with this, but be strong!
Post # 7
@OctoberBride12: Some of it is joint pain. the best i can describe it is it’s as if my joints are bending backwards. They’re of course not but thats how it feels. Half of my days are spent hunched over. Then there’s the numbing tingling pain in my hands and feet. Oh my and the headaches. Some days i cannot get out of bed between pain and fatigue. I’m 32 and feel 90.
Post # 8
@MrsPanda99: Thank you very much
Post # 9
@HobbyLobbyist: That is exactly what i wish to find, a natural pain reliever of sorts. The vicodin messes me up and I prefer not to take it. i could probably find a support group in the city nearby-ish. Perhaps there is an online community. It does seem that many doctors are very ignorant about Lyme. The second doc that I saw literally told me that i was an insane pain med seeker and it couldn’t be Lyme because he just didn’t think so. I’m in the midst of having him fired as we speak. Homeopaths are awesome folks. I got bit by a wolf spider a few yrs back and he drew the poison out with herbal salves.
Post # 10
@Glenda_the_good_witch: Sorry you are dealing with this. Maybe someone on these sites will have some suggestions for something more holistic that might relieve your discomfort.
Post # 11
Post # 12
@Glenda_the_good_witch: I thought of her name.
@CARA1978: Please correct me if I’m wrong, but I’m sure I remember a post you made about this same issue. Maybe you could provide some insight?
Post # 13
It’s awful but there are so many stories abotu people who suffer with Lyme for years before a doctor will test them. You just need to be very clear with the level of care you expect. Doctors work for you– if they aren’t listening to you, move on. I am sure online groups can recommend doctors who understand Lyme.
I know it’s different, but I wonder if a rheumatologist could help you since it’s joint pain?
Post # 14
@Glenda_the_good_witch: have you tried acupuncture? I don’t have Lyme, but I do have fibro and my joint pain can be debilitating some days. When I went to acupuncture weekly, it helped relieve some of the pain. My heating pad is sometimes like an additional limb on bad days since the heat helps ease my joint pain.
ETA acupuncture was able to help decrease the frequency of my migraines as well.
Post # 15
I will say that most doctors, esp in primary care, are WELL versed in lyme disease. I think the unfortunate piece is that you hear about lyme so much in healthcare “this time of the year” that some docs definitely do get very laid back about it. (im a RN working in primary care). However, all my docs I work with test for lyme for any joint pain etc during tick season.
We had one girl who actually had inflammation around her heart due to lyme, she had left an old doctor who told her it was nothing and came to us.
Lyme testing is also super unreliable which does not help. Lyme tests are most often negative (many false negatives) and someone really should be tested again 4-6 weeks after symptom onset as well.
Post # 16
I was diagnosed with Lyme at age 17, after years of having joint pain and fatigue. Unfortunately I found that my doctor didn’t even consider this a possibility, even though I live in a heavily wooded area with many pets, and I had a dog die of Lyme a few years prior. I had to become my own advocate and demand that he have me tested for the disease. He ordered the test claiming that “there’s no way you have Lyme, but if it will make you feel better to rule it out, then that’s what we’ll do”. Lo and behold I get a call back two days later from him saying that I tested “remarkably high” on the scale, meaning that the disease had been in my system for a significant amount of time. Needless-to-say, we were furious. For years I had been suggesting that the reason behind my pain and fatigue was this disease. I went on Doxycycline for three months, and those months were some of the most miserable of my life.
And now, nearly six years later, the disease is under control, but because it was left untreated for so long, I will always have lasting effects as far as joint pain. It is infuriating to be 22 years old with the joints of a much older woman. I try not to let it affect me, but sometimes it does anyway.
Getting to your question (finally, right?), I have found that chiropractic work helps me, but that was only after the antibiotics stopped. I remember being on the medicine and questioning why because it only made things worse. However, it’s necessary to let it run its course in order to prevent further and more dangerous disease symptoms such as kidney, liver and heart failure. Try to take it easy and take lots of warm bubble baths until you are done. These antibiotics are no joke, but you will feel better once they are done.
I hope you feel better soon!