LymeNet Flash: My Leg is Getting Worse

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Posted by painted turtle (Member # 7801) on :

I am in extreme amounts of burning pain in my left leg and it has not let up in several weeks, continueing to get worse.

I am losing more and more sensation daily and foot getting more tingling.

So much pain in my leg!

What is causing this??? Darvocet doesn't touch it.

It hurts very bad like I'm losing it or something. My entire left side is losing sensation, but my leg is really scaring me it hurts so bad and is going numb.

Posted by snowflake (Member # 8950) on :

Are you taking antibiotics? If so, have you tried to lay off the abx for a couple days to see if it improves?

Have you recently changed medication, dosage, added a supplement, etc?

Do you have clotting issues? Is the leg swollen, discolored or having decreased pedal pulse? Is the color of your toenails good?

Posted by painted turtle (Member # 7801) on :

Hi snowflake,

took a month off abx and started back up about a couple weeks ago.

toenails are fine. some inflammation, mostly pain and muscle twitching, burning, tingling.

there is nothing left of my hip joing, my thigh feels like it is just bone, and my knee is in loads of pain, tingling cold calf and feet.

just lyme, I guess. I think I worry it could become something additional.

It's not easy to deal with this pain.

Of course everyone here knows that. [bonk]

Posted by snowflake (Member # 8950) on :

Ahh,

this sounds like my herxes when I took zithromax early on. Twitching muscles, burning in legs, feet felt like they were on fire. I thought I couldn't get through it and that I was getting worse, but later realized it was a really bad, long herx. Zithromax stays in your system for a while due to the long half life so if you go off it may take a little while to feel better again.

SOO glad you have the pain meds to help. My llmd does not prescribe pain meds and my general practicioner doesn't understand that lyme disease and herxing can be painful.

I have been on treatment for over a year now and only one have I gotten pain meds - vicodin - when I was ulitimately force to go to the ER for severe headache and vomiting from a bad babs herx from Quinine. Whoopie- they gave me a whopping 4 pills. It's extra strenght Tylenol for me and lots of suffering.

I can empathize. The nerve pain sux. Mine is mostly in my arms now and has lessened in my legs so I guess I have made some progress.

Good luck...

Posted by Jill E. (Member # 9121) on :

My entire body has been like this for three years. The nerve burning/tingling has been my most disabling Lyme symptom.

Medications that are used for nerve pain include Neurontin, Lyrica or Cymbalta. I couldn't tolerate even a tiny dose of Neurontin, so I gave up and just tough it out. But I totally empathize.

In your case, it does sound like it could be a herx making it worse.

One Lyme pal of mine does get some relief from the burning by using a Neurontin/Elevail combination. But of course, it's a big decision whether to start dealing with more medications.

Good luck!
Jill

Posted by jbgoth (Member # 5567) on :

I have burning in my lower right leg too. It drives me crazy. Its like a white hot feeling. It comes and goes.

I cannot have a massage therapist work too deep in my legs because it makes the pain worse.

I hope you feel better soon. I know what you are going through.

Jordan

Posted by clpgotlyme (Member # 7875) on :

Turtle,
My left leg must be talking to yours. I am also having a painful, burning, numbness. When I walk much it feels like a painful tree trunk. Very difficult as I walk dogs as a part time job. Hope we both get over it soon!
Cindy

Posted by painted turtle (Member # 7801) on :

Cindy, well lets send those left legs some healing!

Jordon, I have been receiving massage on the leg and swedish too, so surely have increased toxin circulation from that too. Once a week.

Snowflake, yikes no pain meds!!?? Well, mine don't work anyway.... [bonk]

But sometimes a heating pad helps quite a bit...until I get up to walk and my legs turn to spighetti!!! [dizzy]

Thanks all...I know its not just me.

Not sure about adding more pain med to the mix. I'll see how it goes.

Definitely going to beat this thing.

[group hug]

Posted by Andie333 (Member # 7370) on :

turtle,

I'm getting help via acupuncture for some of the symptoms you describe. The acupuncturist said a channel in my leg was all clogged up (layperson's translation here...) and she used the needles and another technique to help open things up.

Still too early to tell if this is going to help, but I'll let you know. Thsee were symptoms that had diminished quite a bit for me then got stirred up again when I treated my hip/ knee and calf with essential oils.

I know the oils are working, but like you said, the pain can be agonizing!

Andie

Posted by Carol in PA (Member # 5338) on :

Painted turtle:
I'm under the understanding that burning pain like you have is neuropathy.
Decreased bloodflow to the nerves results in less oxygen to the nerve cells, and the result is pain.

I've seen something that can be used for neuropathy, a far-infrared heating pad.

This uses farinfrared light rays, reaches several inches deep into the tissues, and increases the blood flow, which should relieve the pain.

Thermotex� TTS Platinum Infrared Heating Pad
http://www.biotechresearch.com/catalog/product_info.php?cPath=34&products_id=29

I bought one of these to use on my low back pain.
It helped so much that I haven't needed to use it lately.

It can be used for diabetic neuropathy, so I don't know why it couldn't be used for Lyme neuropathy.

Before I purchased it, I looked for reviews of it, and found several very complimentary writeups.
I didn't find anything bad written about it.

Another idea, in a similar vein, is light therapy with specific wavelengths of far-infrared light.

This is offered in some physical therapy departments, so it may be covered by insurance if your doctor orders it.

Here are some of the sites I found when I looked for information:

Light Force Therapy
http://www.feelgoodstore.com/ProductInfo.aspx?ProductGroup_ID=656&src=TLGOO_Light%20Therapy

Anodyne Therapy
http://www.anodynetherapy.com/Products.htm

BioBeam 940 Therapy Light
http://www.dermalogix.net/order.html

Just some ideas.
Carol

Posted by Nebula2005 (Member # 8244) on :

What is it about left legs?

I had these symptoms about eight years ago, before I knew I had Lyme. In fact, I suggested Lyme to my GP, who blew me off. They went away.

Then, three years ago, they came back. Result: diagnosis of osteoarthritis in my left knee. Even though it was my whole leg that was involved.

My whole leg would swell, get stiff, burn and ache ache ache.

I had a job where I stood outside for hours, in the heat and cold. It didn't bother me as bad when I was walking, but standing made it turn into a big, fat, painful log.

I used cold packs, heat packs and elevated it. These all helped to a degree. None of the NSAIDs I tried worked. It would keep me awake aching at night.

A short course of minocycline for an unrelated problem seemed to help a lot with the joint pain.

Then, it got better.

Now it doesn't swell, but the knee joint gets real sore. My shins hurt. (I'm on doxy.)

Now, I guess since the infection has gone deeper into my nerves through the years, the pain is in my face and ears.

I haven't found anything that makes that go away.

Perhaps, left legs are more susceptibile because the lymph drainage on the lower right side is independent of the upper right side. The lower and upper left sides are connected.

I do know that massage therapy made my leg WORSE, but it did help when my right hip was hurting.

Posted by Aniek (Member # 5374) on :

You want to be on medication that helps nerve pain. Darvocet does not work on nerve pain.

Have you had any x-rays or MRI's? It could be pinched nerve of some sort, or you could have something in your hip that is physically causing the pain and loss of feeling.

If you are losing that much feeling, I'd recommend going to a neurologist and/or pain specialist. You want to make sure there isn't something physical causing damage that can easily be corrected. You also want to make sure you are seeing somebody who really knows how to treat the pain.

Even if that doctor doesn't think you have Lyme. They can still help treat the symptoms and make your life much better.

Posted by DolphinLady (Member # 6275) on :

I'm with CarolPA, infrared light is great for neuropathy, pain, inflammation and improving circulation.

I used a photonic stimulator made by bales scientific. You can google them for contact info and perhaps ask for a local practioner in your area.

Hope you find relief real soon.

Posted by painted turtle (Member # 7801) on :

Thanks all, I will look into the things mentioned...infared. I have not gotten any imaging on my actual leg and am actually quite tired of going to a dr so I probably won't!!

So, I know my leg and hip in bad condition but hopefully will get better as the lyme and company are treated. Had a really hard last few days but am doing a little better today. [Smile]

Posted by jbgoth (Member # 5567) on :

Now, both of my legs hurt!

I took a vicodin and it made them feel better. Im also on elavil, but only 10mg.

We had our carpets cleaned last week and it seems like my burning started around then and it has gotten worse everyday. I think they used some kind of chemical to treat it.

Im wondering, if maybe im having a reaction to the carpet cleaner? The house did smell kinda toxic after it was done. I have all the doors open, but, its so hot and humid outside.

Soooooooooo over this already.

Hope everyone is feeling ok today.

Jordan

Posted by gael1111 (Member # 8816) on :

When I started doing colonics, enemas and drinking more water, my pain went away. I was on morphine, because I have a compressed spinal cord and lots of nerve damage from the lyme.

Most of us are dehydrated and don't realize it. There is a lot of good info on healing and water, if you do a google search.

Sometimes the answers are not as complicated as we think they are.

Hope this helps,

Gael