posted
My Leg pain is so severe that it sometimes reaches level 10 pain. Last night for instance. It has been bad all week, about a 7 or 8 and last night it went to a 10. It is hard to describe, feels nerve-like in nature.
It starts at my groin, butt, hip area and radiates down through my thighs, pass my knees and into my shins and ankles. Usually it is worse at the base (top) of my leg and in my thigh.
I am wondering if I should/can get pain medicine for this. Nothing seems to help and nights like last night are too severe for me to handle. I need advice on how to approach this pain med stuff. I am terrified of getting addicted! I also have severe GI problems so taking pain meds also worries me as I have heard they can mess up your tummy.
However, I need something. Because when it gets like that I want to amputate my legs, and I am really truly not kidding.
Please help me. I am desperate.
Posts: 341 | From NY/FL | Registered: Apr 2010
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posted
Any chance this can be coming from your spine?? May need to get an MRI to make sure.
I hear ya on the addiction issue AND the stomach issue. Some say you can't be addicted if you actually have pain, but that is not true.
I think you definitely need to have them on-hand so you don't lose your mind or cut off your legs!! Then YOU can decide how often you want to use the pain pills.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I'm sorry that you are in such pain. I used to have overall body pain at that level so I understand.
If you have a lyme doctor I'd give them a call and see what they recommend.
If it were me. I'd try to get to the root cause of the pain. It sounds like you may have a trigger point that is causing the type of pain you describe. There are trigger point massage therapists who might be able to help you. If this is the cause, you can sometimes get relief almost immediately if you find the trigger point that is causing referred pain. http://www.triggerpointbook.com/
I would go for anti-inflammatory herbs for some possible relief. There are lots of postsin the archives with information about that. Curcumin is often used.
Good luck, I hope you get relief soon.
Terry, I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I too think you need to see your doctor. Pain like that could come from anything.
Bowels, female?, veins, spine, metabolic.
I once had screamers like that due to calcium from a drug reaction...
I would get it checked out.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Sounds like L4 L5. My hubby had the same pain in same places. If it's a 10 maybe you ruptured a disc? Tramadol, Valium helped him temp. until he could have surgery. Just a thought, I'm not a doctor.
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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posted
Thanks everyone. I have actually had this pain since I was 10, but it continues to get worse. I have had a lumbar spine MRI that was negative for any hernias or disc bulging.
I was thinking/hoping it was from the Lyme.. does that not sound right? I am seeing LLMD Jan 5 so I will speak to him then, I just hope I dont get an 8-10 type of day/night before then.. .unfortunately it is likely I will.
Pinelady- what do you mean bowels? female? I am both female and have GI issues... any thoughts there?
Lymetoo- yes, I do think addiction is possible even if the pain is real.. in fact I think it usually develops in people with real pain because they ACTUALLY need the medicine! At this point, I am willing to try pain meds but again worry about tummy too..
Posts: 341 | From NY/FL | Registered: Apr 2010
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posted
I've had pain like this for over 20 years, on and off. Mine starts in my toes and goes up, sometimes with wicked muscle/tendon cramping. I've thought the same thing - when this happens it's a good thing I don't own a chainsaw.
I've had all kinds of tests, CAT scans, MRIs, etc. My spine is fine, no problems found. I've tried pain meds and they take a little of the edge off, but never make it go away completely. I mostly do without because I have to work and can't be zonked out on pain killers.
Wish I had some answers for you.
-------------------- "To eat is a necessity, but to eat intelligently is an art" - LaRochefoucauld
Lyme neuro symptoms for 20+ years. Infected in Maryland. Diagnosed with Lyme Jan 2011. (previously diagnosed with CFS, Fibro, peripheral neuropathy) Posts: 261 | From Colorado | Registered: Oct 2010
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posted
Well Renny, I know just how you feel, my legs are both like that, and I had a fusion L4/L5, only because the quack that did the surgery guaranteed that my leg pains would disappear after I have surgery. That did not happen, 9 years later I am still in pain, BUT I have been on many pains meds, and still am. Clonazepam has been the best sofar.
There is help out there for the pain folks. Neurostimulators, they are implanted under the skin on the hip. They implanted me with one, and I am getting about 35-40% relief from the pain, but I still need the meds also.
My pain is generally all over my body, and it goes on daily. Not much of a life tho.
Yes,the pain meds cause stomach problems, and I have a naturalpath sp? help me with my leaky gut, and that is under control. Diet has so much to with this disease. I have found adding flax meal to my cereals has made a major difference in stomach and bowels.
Best of luck with your leg pains.
Mary
Posts: 44 | From PA | Registered: Jul 2004
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posted
Thanks everyone for the responses. Do you believe it is the Lyme that caused the leg pain? I guess I am the kind of person who really likes to UNDERSTAND why something feels so bad.
Mary- I am interested in the neurostimulator- what is it like? Is your pain intermittent or constant. Mine waxes and wains.. it can get down to a 1 or 2 level discomfort but then can shoot up to a high level of pain and stay there for days in a row.
Ruby- interesting that we have the same pain but mine starts and the top and goes down and yours does the opposite.. I wonder if this means it is a different effected nerve?
Posts: 341 | From NY/FL | Registered: Apr 2010
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Yes, its all lyme related. I have had lyme for a very long time, 35 plus years.
Diagnosed in 2003, so I have had pain everywhere, and it rotates from one area to another. Leg pain is there most of the time and usually at 7-8 level.
The stim is meant for certain people. You can do some research under www. Boston Scientific.com and see if its something for you. This is a last resort type of process, after years of narcotics, and NSAIDS, and you name it to stop the agonizing pain.
They will not just implant a stim because of leg pain, the patient must go through a series of drugs, and physical therapy, aqua therapy and so on. If you want more info I can help, but look up Boston Scientific.
Mary
Posts: 44 | From PA | Registered: Jul 2004
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posted
I have had the pain for many years, but have not tried many treatments. It started when I was 10 and I was told it was growing pains. I sort of "trusted" my parents and doctor that that's what it was.
It got worse through the years. As I got older I realized more and more that there was NO WAY it was growing pains. Other kids were not in this much pain. However, I kept it quiet
In college and after it got so bad that I could barely use my leg sometimes. I still remained active when I could though.
I think I have a long road of trial and error before the stim.. but I will certainly read up. I have never even tried a real painkiller...
was diagnosed with Lyme 4/2010...after 15 years of suffering. I have yet to have any relief from treatment...
Posts: 341 | From NY/FL | Registered: Apr 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
My son is in this kind of pain... all the time with very little relief, even with tylenol #3 w/cod.
I am considering finding a pain management doctor. This kind or pain is not something that should have to be tolerated long term. He is so young and talked the other day about not wanting to deal with it anymore. I have caught him biting at his wrists and arms. Makes me want to cry.
Renny - I am sooooo sorry you have been dealing with this so long. I wish I had an answer for you. Pain management? Pain clinic?
I believe this is caused by inflammation... Currently, our supplements for inflammation are: mangosteen; tumeric; a formula by Jarrow that includes glucosamine, chondroitin and MSM; something I have taken for my arthritis - grapeseed extract by USANA - called proflavonol magnesium citrate vitamin d teasel root glutathione
Remember...even with all of these... he is still in pain. Like I said, wish I could help!
-------------------- 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 am def going to look into a pain management clinic or hope that my new LLMD can sort of guide me on how to deal with this stuff as it gets worse and worse over time.
Why is your son biting his wrists? Because the pain is so intense? I was about his age when I began with the leg pain... it really is soo unfair for a child to have to experience that level of pain.
I am sorry. I hope his meds start helping with the pain soon. I wish I had advice!
Posts: 341 | From NY/FL | Registered: Apr 2010
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momlyme
Frequent Contributor (1K+ posts)
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posted
Yes. The biting is because of the pain. I think it embarrasses him when I "catch" him doing it. He rates his pain as a 9+ ALL THE TIME.
I wish I had advice for you too.
-------------------- 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
This makes me sad, because I had this pain when I was his age. It is so wonderful though that you are attentive to it and understand that it is real. I remember being told it was growing pains and thinking, MY GOODNESS, I must be a complainer because this means that ALL kids have this much pain.
It really does a number on your psyche. I hope his treatments work.
Has anyone out there had successful reduction or clearing of pain symptoms with treatment for Lyme? If so... what meds?
Posts: 341 | From NY/FL | Registered: Apr 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Thanks renny... sorry to stir up old wounds with you. You will find relief... and so will he. Never quit - trust that you will find the solution for your body. Keep asking questions and you will find an answer.
If you don't have a picc line, have you tried a fir sauna?
-------------------- 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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And no PICC line- had it removed due to clots.
Posts: 341 | From NY/FL | Registered: Apr 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
For detox... Far infrared sauna... do a search for it on here. I researched for a while before I bought a personal one. My husband and I are using it for detox... my son has to wait because he has a picc line.
-------------------- 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
Thanks for the info. I will investigate. I am not even on any meds right now because I am waiting for a new LLMD appointment.... and you know how long that can take!
Posts: 341 | From NY/FL | Registered: Apr 2010
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