posted
I have been treated for lyme in the past. Been off abx for few years now.
My biggest complaint is the return of very bad pain at night, right hip and sometimes knee joints. Also pain in muscles.
A deep radiating pain that wakes me up over and over again all night long.
Pain is relieved a little when I lay straight on my back or stomach with legs stretched out.
Once I return to either side to sleep, whether legs are bent or straight, pain comes back. This also happens if I try to take a nap during the day.
Does anyone else experience this? Any suggestions?
I take 2 soma at bedtime. (I started with one, then 1 1/2, then 1 3/4, now 2.) It helps me to fall asleep and gives me about 2 hours before I awake in pain.
I hate sleeping pills....they do not help me.
I am otherwise ok....I live with a certain amount of pain everyday....it has become my "normal." And fatigue is present always.
I walk 5 miles a day at a brisk pace. (15 minute mile) The pain is not that bad when walking. I am not overweight. Walking (exercise) really helps me mentally.
Someone suggested pelvis might be misaligned....causing one leg to be shorter than the other, resulting in strain and pain.
My fear is it's just lyme rearing its ugly head again.
Thanks for listening! Joy
Posts: 162 | From DE | Registered: Feb 2002
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posted
HI Joy I dont know first hand what you are going through. But I watch my husband go through it day and night. To answer you question you arent alone!
One thing I do know is try to minumise the use of Ibuprofin! The docs kept prescribing it and Naproxen (spelling??) he now has so much inflamation in his stomach he had to stop his IV rocephin.
I hope I helped you! Joyce
Posts: 34 | From MASS | Registered: Sep 2005
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Joy
I have had Lyme for many years-- joint pain was my worst symptom- I would crack and pop -stiff all over-
I started taking Glucosimine Sulfate it has helped me tremendisouly--
It rebuilds cartlage-- it really dose work
I used to work at a huge health food store-- I know hundreds of customers it has helped--
I know 2 people who were going to get hip joint replacements that started taking glucosimine sulfate and did not have to have the operation done--
Lyme really hammered my joints-- I feel if I had not taken GS I would be in a wheel chair for sure-
Buy at a health food store-not Wal mart-
A months supply is about $12- I take 2000mg a day-
Get the kind that dose not say HCL on the lable--it is not as effective
MSM is also good and you can get GS and MSM combined--
Magnesium also helps and many here have had good results with it-
I hope this helps you-Jay-
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
For me, the horrible hip pain was helped when I got a Select Comfort bed - the air-mattress type. I discovered that this type of bed would help by accident, when I bought one of those $30 air-beds you can get at any WalMart, KMart or Target. I felt so good, I bought the real deal (used). Glucosamine did NOT help me. MSM did help for a while. So, two days ago I went to a pain Dr. Now taking serious pain medications. You should not have to hurt every day. I know what it's like - the thing is, you don't know how bad it is, until it's gone. You don't realize how pain every day effects your life and your mental and emotional balances, until it's gone. I NEVER thought I would be one to take pain pills, but here I am and for the first time in decades I am beginning to think I might have a chance at life again. Hope you do too. See if you can't find a Pain Clinic or a Pain Dr. Mine is an Anesthesiologist. Cheers, *Bit*
Posts: 116 | From Bisbee, AZ USA | Registered: Sep 2005
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I was wondering about mattresses.......I'm not in a position to buy new right now, but I thought maybe one of those waffle cushion things would help?
I try to stay away from NSAIDS....they make my face and eyes puffy and they don't help the pain enough to look puffy!
I have used percocet in the past and that does help. I'll take one if I am having a lot of pain. Then I'm able to take my walk or whatever I need to do. Yes, pain does get in the way of so much.
I'm out of meds right now. I have appt with PCP tomorrow (she is not lyme friendly) she's more apt to say fibro. At this point I don't care what you call it.....
I hurt, and it's NOT in my head.
I will ask for more percocet, but I don't want her to think I am drug seeking. I do worry a little about addiction and dependence. I've read that when you are treating true pain and not using it recreationally, you are less likely to become addicted...Yes?...
I suppose I could give the glucosomine and magnesium a try. I'm so bad at taking vitamins and supplements.
Thanks again for your ideas. I appreciate them. Joy Posts: 162 | From DE | Registered: Feb 2002
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Hi, Joy!
I didn't realize until I read your question and all the answers that, like Joy, this had been something that really plagued me.
I had a lot of pain in my hips, and it felt like I was sleeping bone-against-concrete or something.
We spent more money than I like to think about on a new mattress. It actually didn't help me at all. My acupuncturist suggested I sleep with a pillow between my knees. That seemed to relieve some of the pressure.
I also started taking glucosamine and using a topical arthritis cream on my hips each night. Plus, all the regular meds that are part of Lyme treatment.
I've been on abx now for about 4 months, and I just realized that the pain in my hips is almost completely gone.
My arthritic knee keeps me from walking the 3 miles I used to walk (heck, I struggle to even walk a half-block now). BUT I no longer have that hip pain.
I sleep like a baby now.
Hope you're able to find some relief!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi Joy,
I had spine/hip pain that would wake me up in the middle of the night and I wondered how in the heck I was gonna get out of bed or roll over.
My pelvis was misaligned, after the birth of my son in 1996, and it did cause one leg to be shorter than the other. However my massage therapist did fix it for me.... it helped for a while, but the spine pain eventually came back.
The combination of Plaquenil/Zithromax and Malarone really helped me. After a year of this abx combo..(knock on wood) the spine/hip is gone.
I hope you feel better soon.
[ 18. September 2005, 04:37 PM: Message edited by: Beverly ]
Posts: 6638 | From Michigan | Registered: Jun 2001
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Joy, I'm just playing devil's advocate here, but if you're still experiencing Lyme symptoms, why aren't you still on abx?
As for pain, I live with it too. Try Potassium Magnesium Aspartate.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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I was so hoping I was better, and I was for a long time, but slowly my symptoms have been coming back and getting progressively worse.
Deep down I know I will need to go back to my LLMD and back on ABX.
Though I like my PCP, she does not believe in chronic lyme, etc.
My feeling is (and this is just my opinion) that I'll never truly be lyme free....I can just beat it down with abx, then go off, then go back on when symptoms come back.
But yes Monica, you are right.....I'm sure that's why I came back here last night!
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Joy,
This is has been one of my longest symptoms. I think it has a few causes. I have a spondyloarthritis, arthritis of the spine, which causes inflammation in my sacroiliac joints. These are right above the base of the spine. Low back, hip, buttock and knee pain are all symptoms (www.spondylitis.org). We think mine was caused by lyme and salmonella.
I also am double jointed in my hips. This means I am extremely flexible in some ways, but have very limited movement in others. I feel like my hips pinch when I move in certain directions.
Flexeril helped immensely. I was on it 20 months, throughout lyme treatment. It's a strong muscle relaxer.
I react similarly to how it sounds you do to meds. So I didn't like the idea, but I stuck it through until I got relief. I started at 5mg a day, and each week increased by another 5mg until I got to 30. It made me very tired at first, but I eventually got used to it.
The flexeril allowed my muscles to relax enough that my physical therapy could take hold and my muscles could relax. I saw a therapist who specialized in myofascial trigger point release. One there was improvement, I stretched and strengthened on my own, mostly through yoga.
I'm off the flexeril now. I'm going back to my pt because some of the hip and back pain returned, but nothing like before the flexeril. I just think I need a little push in relaxing the muscles.
As far as mattress, a foam tempurpedic mattress is wonderful. It's pricey, but I needed that investment to function.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Joy, please learn by my very bad example.
If I had stayed on abx, and been treated by an LLMD who had experience with the disease, I'm sure I would be 99.9% better right now.
What I did for 7 years was go on abx, go off when I felt better, go back on, maybe a new drug, off, on, off, on, etc.
The LLMD I am seeing now says we treat till all symptoms are gone (and beyond, I'm assuming).
I walk with a walker now, but my goal is to be able to walk without aid. Not run in a marathon. Just being able to walk across the room would be nice.
Good luck.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Ooops! Forgot to mention that sleeping with my legs elevated is helpful. Try putting pillows UNDER your mattress so you won't slide off them all night.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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marniaps
Unregistered
posted
Hi Joy Being able to sleep and pain waking me up every two hours has been my biggest problem with my Lyme. I also have low back and hip and knee pain. I'm pretty sure the cartiledge is gone from my knees. I have a tempurpedic mattress and I think that helps, I take soma when the pain is really bad, sometimes it builds up in my neck and shoulders so much that it gives me awful headaches. I also take Ambien, although that hasn't seemed to work as well as it used to. Plus, my homeopathic doctor has me on a tons of other supplements to help with the sleep. Tried MSM and glucosimine for a while, but didn't seem to help me. If you figure something out let me know, because I'm definitely going through the same thing -marni
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