posted
I'm currently having to deal with being treated as if I am an idiot by my mother and my pain management doctor. The doctor has "never heard of lyme causing such terrible pain" and my mother wants to pretend that I'm nothing more than a drug addict.
Please, describe the pain you experience from lyme disease and coinfections as vividly as possible so that I can present them with as much information on other's personal experiences as possible. At this point it is all that has a chance of saving my life, or at least allowing me to be treated with some amount of human dignity.
Anything else that can be said to help would be appreciated. I've tried everything, but I'm being written off as incompetent or just looking to get high on pain meds every time I try to explain. Maybe if i show them what you all have to say I'll have better luck.
Thanks for your time. Here's hoping...
Posts: 8 | From PA, USA | Registered: Oct 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Here are some links to a psychiatrist who got lyme disease and has been writing about it ever since. Maybe these will help you:
I don't know where you are in PA, but this doc has a practice in PA. She finds that many of the patients she sees actually have lyme disease and she sends them off to lyme doctors! Her name is Dr. Virginia Sherr. She does not treat lyme disease herself.
Search around her website (first link) and you may find just what you are looking for.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
My description of severe joint pain from elbows outward; Begins in the very center of the joint as a mild 'ping'. May suddenly jolt, in a flash, from the joint area up into the muscle of the upper arm, sharp....on the outside of the arm, seemingly near the surface. When using the arm, pain extends from elbos, down the arm to the wrists, up the arm into the shoulder muscle. ON a scale of 1-10, ten being the worst, it radiates from a 2 up to a 9 & can do this in an instant. Always seems to be one tiny middle to it.
Hope this helps...
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Severe joint pain was one of my first symptoms. For me, the pain has been unilateral--on my right side--and it affected both my knee and my hip.
My knee swelled to about twice its size, and the pain would be searing. It was so bad, I was unable to walk more than a half block or so in the worst of it.
I periodically get the joint pain in my hip even now. It is nerve pain. You can feel actual heat radiating from my hip, and the pain feels like a hot poker. It is startling, sharp and horrible. There have been times I've just curled into a fetal position and cried, the pain has been so unbearable.
My partner is a shiatsu massage practitioner and was unable to do anything to mitigate the pain. OTC meds did nothing to touch it. I would take tramadol and neurotin for the times this flares.
I will tell you that I tested CDC positive for Lyme and Babs. I was dx in June 2005 and am still being treated. However, I am well enough to be back at work.
I just have to be careful what shoes I wear and how far I walk. It seems that the slightest misstep can end in pain.
I'd also says that on a scale of 1 to 10, the nerve pain can easily reach 9.
hope this is helpful,
andie
Posts: 2549 | From never never land | Registered: May 2005
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
My son, 11 can barely walk some days. He looks like an old man or a woman I knew who had MS. He cries and moans and has trouble sleeping.
He says the pain is like someone is stabbing him with a knife and twisting it. He has headaches, stomach, joint and muscle pain... all of it... he says is stabbing and constant.
My dog is the same way... won't even get up to eat without pain killers and antibiotics. (which they handed me when she got diagnosed with lyme)
My son still has no pain killers.
Maybe we should go to a veterinarian!
Good luck to you. I hope they give you something to make you comfortable. Do you find epsom salt baths helpful. I had others suggest it. My son does not like them, but they may help you.
Sending a warm, cleansing, healing hug your way.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
thank you for taking the time to respond to me.
i saw dr. sherr about a year and a half ago. she ran about $6,000 worth of blood work from 5 different labs, all of which came back positive for lyme, bartonella, and mycoplasma.
so i asked if she could treat me. she said no. so i asked if she knew of a doctor i could go to that would treat me. nothing. so i asked if she could at least help me with pain management or refer me to someone that could. so she ran me through about 12 different antidepressants, all of them doing nothing for me except make my diseases worse with side effects. i begged her to do something. she said "just hang on, i'll eventually be licensed to prescribe methodone". three months later, nothing except i was a lot worse off than when i started seeing her, and a lot poorer on top of it.
at the time i weighed 120 lbs (at 6'1") because i couldnt move my jaw enough to chew, and had no appetite from being in such terrible pain. i have no history of drug seeking behavior or abuse. i was always very polite and understanding of her mental and physical limitations from her ongoing lyme infection. and still, she did nothing.
so i begged her for help, any help at all, one last time. her response, indignant : "I've already helped you a lot".
i walked out of the office, which was really just her house, absolutely crushed beyond words. and looking back on the time i spent going to her, even when she would remember to put in her hearing aid she would never really listen to what i had to say.
i'm sorry, but i really can't recommend anyone else see her. half of the time with her was spent listening to her go on about conspiracy theories of lyme disease and how horrible her husband's life was after he suffered from facial palsy. the other half spent telling me about the amazing effect the antidepressants would have on my joint pain.
please, understand, i'm sure she has helped plenty of people in the past. i'm sure she's a good doctor and means well. but she just didn't do anything to get me well. and any time i show the blood work to any doctor, i'm immediately written off as a mental patient because of dr. sherr's reputation as a lyme psychiatrist.
but thank you for your time, i'm very sorry to have had to say any of that.
quote:Originally posted by TF: Here are some links to a psychiatrist who got lyme disease and has been writing about it ever since. Maybe these will help you:
I don't know where you are in PA, but this doc has a practice in PA. She finds that many of the patients she sees actually have lyme disease and she sends them off to lyme doctors! Her name is Dr. Virginia Sherr. She does not treat lyme disease herself.
Search around her website (first link) and you may find just what you are looking for.
Posts: 8 | From PA, USA | Registered: Oct 2010
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posted
thank you, yes that does help. i haven't had too many problems with swelling, though some times i wish i had if only to have something to prove that what i'm experiencing is real. but i do recognize that kind of pain, i can only hope that when i show these replies to the people in my life it begins to open their eyes. again, thank you for your time.
quote:Originally posted by Andie333: Severe joint pain was one of my first symptoms. For me, the pain has been unilateral--on my right side--and it affected both my knee and my hip.
My knee swelled to about twice its size, and the pain would be searing. It was so bad, I was unable to walk more than a half block or so in the worst of it.
I periodically get the joint pain in my hip even now. It is nerve pain. You can feel actual heat radiating from my hip, and the pain feels like a hot poker. It is startling, sharp and horrible. There have been times I've just curled into a fetal position and cried, the pain has been so unbearable.
My partner is a shiatsu massage practitioner and was unable to do anything to mitigate the pain. OTC meds did nothing to touch it. I would take tramadol and neurotin for the times this flares.
I will tell you that I tested CDC positive for Lyme and Babs. I was dx in June 2005 and am still being treated. However, I am well enough to be back at work.
I just have to be careful what shoes I wear and how far I walk. It seems that the slightest misstep can end in pain.
I'd also says that on a scale of 1 to 10, the nerve pain can easily reach 9.
hope this is helpful,
andie
Posts: 8 | From PA, USA | Registered: Oct 2010
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posted
my god, i can not imagine having to go through this at age 11. for anyone who has experienced it, the gait of a person in severe pain is unmistakable. i can not extend enough empathy to you for having to watch your son fight through this. thank god for the innocent resilience of children.
it sounds as if my pain is somewhat similar to your son's, and i can say in all honesty that there aren't enough words in the english language to even come close to describing the sensations. but what you've said i hope will shed some light for the people in my life that have never experienced it.
thank you for taking the time to respond. i pray that you can find treatment for your son quickly, no creature should ever have to endure anything near what this disease does. one thing i do know though, never lose faith in your son. just keep loving him for who he is, remind him of the good times, and remind him that one day it will be better. without that connection to family and humanity, without those reminders... there's very little to live for, believe me.
again, thank you so much for your time responding.
quote:Originally posted by momlyme: My son, 11 can barely walk some days. He looks like an old man or a woman I knew who had MS. He cries and moans and has trouble sleeping.
He says the pain is like someone is stabbing him with a knife and twisting it. He has headaches, stomach, joint and muscle pain... all of it... he says is stabbing and constant.
My dog is the same way... won't even get up to eat without pain killers and antibiotics. (which they handed me when she got diagnosed with lyme)
My son still has no pain killers.
Maybe we should go to a veterinarian!
Good luck to you. I hope they give you something to make you comfortable. Do you find epsom salt baths helpful. I had others suggest it. My son does not like them, but they may help you.
Sending a warm, cleansing, healing hug your way.
Posts: 8 | From PA, USA | Registered: Oct 2010
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posted
it really is horrible not being able to walk properly. i used to see the elderly on the street, shuffling along as i now do, and i would think to myself "wow, they must be really old"... i feel so ashamed for that thought now, as now i see them walking with the unmistakable gait of arthritic agony and think "good christ, they are in so much pain just trying to get across the street and people are acting like they don't even exist. how can i possibly be a part of this kind of society?"
also, i took aleve for about a year until i realized it was only making my pain worse. it would relieve the stiffness, but leave me with a terrible ache. all i can guess is that the inflammatory reaction, for me at least, is somehow keeping the infection in check. i realize that some people suffer from severe swelling and that sort of thing is very damaging to tissues and joints, but for me the trade off is worth it.
if you do happen to be able to find a doctor kind enough to prescribe you pain medication, you may find as i have that the stiffness and inflammation are significantly reduced because of the lack of pain for the body to respond to. there are some days now that my body almost feels normal again, no clicks and popping, no feeling of powdered glass in my joints.
good luck to you, and thank you for taking the time to respond.
quote:Originally posted by cjfrank: I also experience severe joint pain.
Most of my pain is in my knees but occasionally I have throbbing in my left hip.
I can not spend much time walking as my knees get stiff and ache and I find myself just shuffling along, tripping over anything in my way.
I am still in the process of getting help for my Lyme issues and rely on over the counter pain meds such as Aleve, which doesn't really help.
Posts: 8 | From PA, USA | Registered: Oct 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Thanks Aitch!
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
I have severe pain in my shoulders, knees, ankles, wrists, elbows and hips. Sometimes they swell and turn red and radiate heat, and sometimes not.
There are times when I can't walk. We have hardwood floors and I'll use my computer chair to scoot around the house. ONLY if I absolutely have to get up, like to go to the bathroom.
I've had to have help getting dressed when my shoulders are "acting up", as I call it.
Bending the knees to sit on the toilet is misery. Can't even turn a doorknob when my wrists are involved.
I'm already on narcotics b/c I have terrible back problems unrelated to lyme. They do NOTHING to touch this. NOTHING.
I've taken anti-inflammatories...they don't touch it, either.
Three weeks ago I went off of all my supplements, b/c I knew I had an appointment with a rheumatologist today (I ranted here about that). I had already fallen off the wagon as far as the lyme diet went, which I KNOW exascerbated the symptoms.
I'm back on that diet. I will start my supplements again tonight. The lyme diet has been the single best thing I have done for myself in the absence of an LLMD.
It helped me personally tremendously. I would be "sore"..but not the excruciating pain I've been in lately. Not bedridden.
I know I've harped that diet to death here, but it really helped me so much. It's not a cure by any means, but it really helped.
Posts: 624 | From Oklahoma | Registered: Jun 2010
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posted
Misfit, can you post a link to this diet for me? or if not, maybe just a simple outline of it? i'm usually very careful about what i eat, but if theres anything i've missed cutting out or anything i should have more of, it'd really help to know.
and i hope you can find something to help your pain more than you have until now. have you tried different painkillers? i know that some act on different opioid receptors, like morphine acting on mu receptors while something like oxycontin works on kappa. i've personally experienced a massive difference between the different meds, and even between generic and name brand versions of the same chemical.
anyway, best wishes. thanks for taking the time to respond.
quote:Originally posted by Misfit: I have severe pain in my shoulders, knees, ankles, wrists, elbows and hips. Sometimes they swell and turn red and radiate heat, and sometimes not.
There are times when I can't walk. We have hardwood floors and I'll use my computer chair to scoot around the house. ONLY if I absolutely have to get up, like to go to the bathroom.
I've had to have help getting dressed when my shoulders are "acting up", as I call it.
Bending the knees to sit on the toilet is misery. Can't even turn a doorknob when my wrists are involved.
I'm already on narcotics b/c I have terrible back problems unrelated to lyme. They do NOTHING to touch this. NOTHING.
I've taken anti-inflammatories...they don't touch it, either.
Three weeks ago I went off of all my supplements, b/c I knew I had an appointment with a rheumatologist today (I ranted here about that). I had already fallen off the wagon as far as the lyme diet went, which I KNOW exascerbated the symptoms.
I'm back on that diet. I will start my supplements again tonight. The lyme diet has been the single best thing I have done for myself in the absence of an LLMD.
It helped me personally tremendously. I would be "sore"..but not the excruciating pain I've been in lately. Not bedridden.
I know I've harped that diet to death here, but it really helped me so much. It's not a cure by any means, but it really helped.
Posts: 8 | From PA, USA | Registered: Oct 2010
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posted
The pain is excrutiating! I always told the doctors that it felt like I had shards of broken glass in my blood.
That was before we had figured out that I had Lyme.
I had some horrid joint pain but mostly nerve pain in my hip and my back.
My feet, arms and wrists hurt a lot.
It feels like I am being burned alive!
It feels like someone is tearing my skin off of my body in huge chunks!
I sobbed in the emergency room for 8 hours from pain and was ignored.
The only time I have been pain free in 3 years was when they finally gave me a morphine drip.
I take oxycontin and oxycodone every day. It never really helps that much.
So I started Cymbalta, it is starting to help.
When I was taking huge doses of Amytriptalyne and gabapentin, the pain subsided and I thought I was healed and cured!
That was also before I was diagnosed with Lyme.
So I quickly went off those meds and then within a couple of weeks the pain came back with a vengence.
I tell my doctors that it is torture.
I would rather give birth to babies every day than experience this pain!
It feels like I am being stabbed with knives!
I have had nightmares about being attacked by huge men stabbing me with knives. THen I wake up from the nightmare and realize that I am in horrible pain!
It feels like vinegar and salt being poured into a open wound, except that my entire body feels like a open wound, no skin whatsoever! and someone is pouring salt and vinegar all over it.
I have huge compassion now for burn victims. It must be horrible what they endure!
Why do we have to suffer? Why are we made to suffer? THis is not our fault! Why are we being punished this way.
At least my regular doctor believed that I was in pain. She is still amazed though because she says I look so healthy and well. She realizes that I am very sick but she would lose her liscence if she started to treat me.
So I fly out to go see a LLMD.
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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Before I started my Lyme treatment, the pain in my hip, leg and back was so severe I couldn't even sit anymore!
When I had to drive it was torture, but I used to sit on a pillow.
The back pain gets so bad that I too shuffle around the house like a "old person", all hunched over.
I haven't been able to sleep on my back or on my stomach since I got Lyme. THe pain is excrutiating!
I have to curl up into a little ball. No one can touch my back at all!
Even if someone slightly bumps my bed, the vibrations would cause intense pain.
Riding in my husbands truck is impossible. I tried and I thought I was going to die from the pain.
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
Well, I'm going to an Orthopedic doc tomorrow about what he might can suggest for this "tendonitis" in my arms/elbow. It's like the only symptom left!
My knees are a bit stiff, though, & the knee cpas feel strange. Seems like it's hard to get going in the morning, but I still manage, go to workouts, etc.
Darnit, I'm almost to the finish line but this dang arm stuff is driving me crazy!
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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