posted
Does anyone have any advice on the best way to try to explain what lyme pain is like? No one without lyme seems to get the fact that I am always in pain? In order of severity my pain is as follows: chostrochondritis, fibromyalgia, headaches, eye pain, ear pain, joint pain, as well as the on and off numbnes, tingling, burning, stabbing, electric like stuff.
Any advice from anyone would be appreciated.
Posts: 48 | From New Jersey | Registered: Aug 2007
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posted
I have to say it depends on the pain. SOmetimes I have pain that I compare to someone slowly dragging a hot knife through my muscles, other times my pain is like my muscles are twisting themselves into knots. My joints feel like they are achy like when you have a really bad flu.
I find the best way to get people to understand is to educate them. I take my husband to appointments with me and give friends and family articles, etc.
But, sometimes, you just have those people who just don't get it.
Posts: 59 | From stratford, CT | Registered: Feb 2008
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
What do you mean by fibromyalgia?
Fibromyalgia is a syndrome that includes many different symptoms. People with fibromaylgia have different types of pain, as well as symptoms that can include fatigue, IBS and depression.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
I was diagnosed with fibromyalgia before being diagnosed with lyme via CDC Positive Western Blot from Igenex. I had all of the tender points so i was given that as a diagnosis. I had a other diagnosis's as well pre-lyme diagnosis, including CFIDS, everything you metnioned and many more.
The LLMD said they are all lyme related.
Posts: 48 | From New Jersey | Registered: Aug 2007
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Aniek
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Member # 5374
posted
magaro,
But what type of pain do you have that you refer to as fibromyalgia pain? I'm trying to help answer your question about how to describe the pain, but to do that, I need to know what type of pain you have.
If you want to describe your pain to others, you need to be able to describe it to yourself. What hurts? What does it feel like?
A description I use that helps people understand is that it feels like somebody is slicing the muscle from my bone with a burning hot knife. Having a strong image helps people imagine the pain and realize it is more than just an ache.
You can also describe what you can't do because of the pain. People have always seemed to understand when I tell them at my worst, I was unable to hold a newspaper and I began eating sandwiches a lot because I sometimes couldn't hold a fork.
I would keep it to the simple things that most people take for granted. If you say "I can't exercise because of the pain" people are likely to think you are lazy and just not pushing hard enough. Find something people won't respond with thinking you are just making excuses. Imagine you are selling the fact that you are in pain, so pick the best examples you can.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
hey aniek- so I see I am not alone in the burning hot knife slicing through my muscles analogy:)
Posts: 59 | From stratford, CT | Registered: Feb 2008
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posted
I can not realy describe it well I guess. I have had on again off again severe/excrutiating/torture like pain in the cartilage around where the ribs meet the sternum. I describe it is like nails, needles, knifing, and like I have been repeatedly punched in the chest, like living hell. A 15 on a 1-10 scale but no one seems to understand. I thought maybe someone had something that gets the point accross. The fibromyalgia pain which migrates is very similar though recently I have also been getting alot of charlie horses in my calves and this week charlie horse like spasms in my pectoral muscles.
I am eating bananas and taking potassium and magnesium supplements as well but it isnt helping.
The really annoying part is that my pain had gradually gone from a 10 down to around a 2 since I have been on treatment with occasional spikes here and there back to 10. I assume this is one of those spikes but it is really really bad and I am generally able to take it but I am beside myself.
I am on doxy (200mg 2x a day)now and started zithromax (250mg a day) and artemisin for possible babesia in the last three weeks. The increasing pain seems to correllate with the zithromax but I am not sure and just can't seem to get anyone to understand (family/friends) how bad this really is so I thought I would ask around for good descriptions.
Prior antibiotic treatments since July included: 3 months minocyline with cats claw 3+ months IV rocephin 3+ months doxycyline
Plus a bunch of other medicines, herbals, etc...
Any thoughts on describing this or better yet how to make it lessen please advise. I also have vicodin but I think it doesnt work and I might as well take a sugar pill at this point.
Posts: 48 | From New Jersey | Registered: Aug 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Unfortunately, some people are just unable to understand other people's pain. Do you look healthy? It's especially hard for people to recognize that somebody who looks healthy is in pain.
As far as helping control the pain, I believe it is vital to work with a good pain specialist. Physiatrists are the specialists I have had good luck with. They usually use a combination of medicine and other modalities like physical therapy and acupuncture.
It is very important to get the pain under control. If the vicodin you have is not strong enough, then you should get a stronger medication. There are also other types of medication that can help.
I take zanaflex, it's an antismasmodic that helps with my muscle pain. Flexeril also helped with my msucle pain, but it shouldn't be used longterm so I had to stop it.
I recently started a supplement called Advanced Inflammation Control by Complementary Prescriptions. It helps reduce the inflammation. It doesn't get rid of the pain, but it seems to be reducing it.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
I am sorry you have such severe pain (an understatement, I know). I have struggled with the same predicament of pain killers not helping at all. Vicoden didn't work for me either.
At first I didn't want to go to a pain clinic for the stronger narcotic pain killers because of the stigma but when my pain became intolerable I didn't have a choice.
Here are some ways I've described my pain: In my neck, shoulders and back I have a sensation that is like pouring alcohol on an open wound but internal and worse.
In my knees it feels like shards of glass are in my joints with each movement.
When I get a deep bone pain it feels like someone is twisting a corkscrew into the bone.
When my knees lock up in the morning and I try to move them it feels like the connective tissue is being torn like a piece of cloth.
Another way I describe my pain is like having a cracked tooth with an exposed nerve throughout my entire body.
Oh yeah, it also helps to use a 1-10 scale. I hope you are able to find adequate relief soon!
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
This is a list to choose from: cutting pounding tingling tiring deep beating squeezing throbbing horrible stabbing burning pulling sickening biting screaming scraping aching uncomfortable cold tugging pricking cruel warm miserable stretching pinching unbearable sad itching terrible stinging cool sore flashing pressing fearful pins &needles sharp migrating tight hot spreading punishing scared ... Also if not on this list this one too: Aching Searing Throbbing Nagging Stabbing Sharp Pounding Gnawing Cramping Burning Tingling Dull Blinding Intense Radiating Piercing
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Pain description by order of intesity:
1. Being hit by a train
2. Being hit by a bus
2. A fall down the stairs
3. A poke the eye with a sharp stick
4. A head whack on the corner of the coffee table
5. Stepping on the legos on the way to the bathroom in the dark
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
It is truly impossible to describe your pain to someone else.
Mine is like hot burning fire inside my arms,underarms legs and sometimes head!
Someone is taking a hot iron and rubbing it up and down my limbs!!!
When I have that pain the only thing that helps is Percoset.
I resisted taking anything for months but it comes to a point where you just have to get some relief!
My LLMD assured me that I am taking it for the pain NOT because I am an addict.
I would never drive while I am taking it and I limit myself to one pill a day when the pain is at it's worst.
It takes away the pain but makes my spacey brain worse so it's not like I feel "better" but at least the burning goes away for a while.
Laurie
Posts: 256 | From long island, new york | Registered: Feb 2008
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daise
Unregistered
posted
Hi Magaro,
You are in pain. I hear you! Most of us are in various levels of bad pain and disability, so you are among friends.
Pain in my head has always been my worst! But it's getting better with antibiotics!
I'll PM you with ideas of how to explain what you are going through, to others.
Lyme pain. Ya. It often flies over the heads of others because they haven't the personal experience to draw from. I've found that word pictures of what we as individuals go through, are a way for our condition to "stick with" others.
And they must understand as much as they are able, right? Right! I hear you!
For example, one of my word pictures I used: I used to "drag along my painful right side." It's the head stuff that is typically the worst--the loneliest--and the most vexing to have to live with.
Just doing the simplest things ...
You might look at a list of signs and symptoms and then form your own word picture. Maybe you'll recall something in your experience of having Lyme that "says it."
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
So sorry about the pain you are living with. For the first time in ten years, I don't wake up several times in the night due to pain. Effective treatment made the pain go away. You'll get there too! Hang in there!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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