posted
Someone posted here asking people's number one symptom. More than half of the posters mentioned neck or shoulder pain. This has been one of my worst problems and I've tried a lot of things to help.
I could use some encouragement today. Has anyone ever overcome this neck pain and stiffness issue or am I doomed like one post said "30 or 40 years like this"
Just saw my LLD yesterday. Not much encouragement there, just keep taking the abx and supplements, added potassium for muscle twitching and benicar, I forget what for exactly.
She is nice and concerned but honest, saying you have to keep living like this until you get your germ load down and your own body is well enough to take over. Could be just around the corner or many more months or years.
I'm pretty down today.
Posts: 199 | From utah | Registered: Jan 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm in your boat bwillis. I asked myself that last night. It's gotten me down too. Always waiting for the 'big breakthrough' never knowing if/what will occur. I hope these LLMDs are on the right track.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
So that's it from this group. Not a good day for me to get ignored, maybe tomorrow will be better.
Posts: 199 | From utah | Registered: Jan 2009
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
It can take a long time. My neck stiffness improved gradually and finally got much better after Babesia treatment. It took me about 4 years before I saw major improvement.
Hang in there it will get better.
-------------------- God Bless You! Everything..is just my opinion. Posts: 6639 | From Michigan | Registered: Jun 2001
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
I'm hoping more people will chime in too. This is such a debilitating symptom. Can't do anything during the day and can't sleep at night because it's so uncomfortable in any position.
Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
That is interesting hurtingramma,
I should clarify, my neck pain never completely went away but it did improve. My neck pain was pretty severe. However, I still have problems with my right shoulder pain and sleeping on that side. ( not all the time, but I am used to it.) Sorry for the downer.
I also went undiagnosed for many years.
-------------------- God Bless You! Everything..is just my opinion. Posts: 6639 | From Michigan | Registered: Jun 2001
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posted
I'm sorry for those of you with problems that don't get any better with treatment. If mine doesn't improve, I won't be here in four years. I can't live like this.
Posts: 199 | From utah | Registered: Jan 2009
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posted
When my daughter was first seeing all the "ologists" and specialists and we were trying to figure out what was up with her, the only consistent comment we would hear from all these experts was how tight and hard her shoulder and neck muscles were and that they had never seen muscles so tight and in a knot--somehow I doubt that but still it tells you how tight and painful it was for her. And as we all know now, it was from the Lyme and co.
I took her to the chiropractor once a week for a few months--4 maybe?--then we added in a therapeutic massage once a week and cut down the chiropractor to once a month, mainly due to finances or lack thereof--but also because we seemed to be getting more out of the massage.
The massage--Swedish massage--has been a lifesaver for her. The massage has loosened everything up, it is relaxing, and it is the only "treatment" she actually looks forward to going to.
So, to give you a bit of a boost, she did get loosened and relatively painfree shoulders and neck after a fairly short time.
(She still has all over body aches, fatigue, and the headache that seems will never go away, but at least the neck pains have been relieved somewhat.)
Have you tried seeing a massage therapist or chiropractor? You probably have, but maybe they didn't do Swedish massage? PT can help too, but massage is so relaxing and beneficial.
Acupuncture is supposed to help too. It did nothing for my daughter though, and we tried both Chinese style as well as Japanese.
(We actually went to an acupuncturist that is renown for "curing" cancer. He went on and on about how he could cure Lyme--big surprise, did nothing for my daughter's condition! Anyway the big hospitals in the Boston area send their cancer patients up to see him and supposedly he has done miracles--unfortunately, sigh, not for us.)
How about the cream or patch called BioFreeze? I think that's what it is called. It is sold at the chiropractor's office, and I think it is supposed to be similar to those arthritic creams--sorry I can't think of the name right now.
The chiropractor gave us some to use on her, but we never did. I always rubbed Arnica cream in instead, and that seemed to help a bit. I do think the BioFreeze is supposed to work really well.
Oh, also, Epsom Salt baths helped her a bit too, just make sure you stay hydrated during and after.
Really the best thing for her has been the massage.
Anyway, I'm sorry that you are in such pain. I know how discouraging this all is. Please don't get up hope.
Posts: 648 | From northeast | Registered: Feb 2009
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posted
I agree about the massage. Massage therapy has been the best thing for neck, head and shoulder pain. THe only drawback for me is that the results last only for a short time sometimes only a few hours but at least I get some relief. I told my husband it might be worth it to send him to massage school!! I have also had some good results from some osteopathic treatment but you must find the right one. THe one I see is fantastic with alternative treatments and combination of massage therapy, manipulation and acupuncture. It took me some time to figure out what worked the best for me. As with many other alternative treatments, the cost can be steep and I don't get treatment very often. That, of course, is a whole other subject.
Posts: 33 | From Ohio | Registered: Feb 2007
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bettyg
Unregistered
posted
hi willis, just getting on here today!
neck/shoulder/lower back pain are HIGH for me too, but i could only give one area so chose my no. 1 pain...
sensitive eyes/sounds..noise/ and chemical smells.
i have my frozen ice packs on me all day while i'm up.
tutu has mentioned intracranial ....; i've been wanting to check into that one.
perhaps later she will show up and share more of that with you and me since i can't remember 2nd word.
hang in there; we're walking in your shoes too!
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Here's what fixed it for me:
1. Large doses of Flexeril at bedtime
2. Trigger point injections of Lidocaine into the muscle spazms that are knotting up your shoulders and the back of your skull (which is the real source of this type of neck pain). And the spasms are due to LOW MAGNESIUM caused by LYME.
3. Restore your MAGNESIUM levels through IV and IM. Would appreciate Marnie chiming in on this area. No amount of orals will get you back to normal if you're low.
4. Use a rebounder (mini-trampoline) several times a week
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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I know this problem. It was so depressing. I used to have it but I got rid of it. I had to look up an old post to remember how I did it. Here it is:
"Sick,
I had the really stiff shoulders as well and have been able to alleviate most of the problem using a combination of infrared light therapy applied to the area as well as massaging the muscles in the area with a variety of topicals: artemesinin gel, ozonated olive oil, venex bee venom ointment, metronidazole cream, and farah's lymessence oil.
Be prepared to have the muscles in that area cramp up severely the first time you treat it. The response I had to the light therapy (the first thing I tried) led me to believe that for those of us with thhis problem, that area has been colonized by tons of bacteria, and I'm not yet sure if it's one or more, because I herx after treatment to just about everything applied.
The artemesinin gel is supposed to be for babesia, and I herx after that, but Venex is supposed to be specific for Bb and I herx with that too. I also herx after applying metronidazole cream (Flagyl) and that's supposed to be for the cyst form, but maybe it's hitting other parasitic forms (babesia) as well. Or maybe the artemesinin is hitting cysts and blebs as well. Who knows? but each of these things seem to help and my shoulders, while I still have some issues, are much better now. I also herxed after IR light therapy and ozonated olive oil also.
The infrared light device I use is the DPL (deep penetrating light) dinfrared light therapy device. Many people sell it online."
Really, the first time my shoulder muscles cramped up I felt like it was going to kill me. It lasted quite a while but with each successive treatment it got better. If you have one of the other infrared light devices you could try that as well. Just put it on the area and hold it there for 5-8 minutes. I hope it helps.
Posts: 975 | From California | Registered: Apr 2007
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posted
Shoulder and neck pain has been my main lyme symptom for 28 years. I can't believe I am still here with the amount of pain I have daily.
I couldn't get by without my chiropractor, who adjusts my atlas (very important!), amongst other things.
Other things that help: I take Soma and Valium together regularly and percocet when it is really bad. Many hot showers in a day. I'm using the bee venom cream now, but not sure if I'm getting any benefit.
If I'm going to get body work it has to be deep, like rolfing or myofascial release to have any hope of not making it worse.
It is amazing what we learn to live with. I hope you are not quite so down today. Every day is such a challenge.
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
"When my daughter was first seeing all the "ologists" and specialists and we were trying to figure out what was up with her, the only consistent comment we would hear from all these experts was how tight and hard her shoulder and neck muscles were and that they had never seen muscles so tight and in a knot--somehow I doubt that but still it tells you how tight and painful it was for her. And as we all know now, it was from the Lyme and co"
I read this and it took me back five years when my daughter was first getting sick. This was one of her first symptoms, then progressed to psyche issues.
When she would go for physical therapy, I would be pulled aside and asked if there was any stress in the home. Then, she would be asked if there was any abuse in the home.
I'm sure they have to cover their bases, but we were getting annoyed with the accusations.
My daughters neck and shoulder pain as improved with treatment, bartonella and babesia.
I would recommend an infrared heating pad. Someone here recommended a Thermotex infrared heating pad, I thought we would give it 30 days to see improvement, but my daughter's back pain seems to be making an improvement in one week.
Not remission, but she is better functioning after seven days.
infrared heat isn't just heat, it penetrates deep into the tissues. We've always loved the infrared sauna, but I'm thumbs up on this pad
Thanks CarolPA
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
CarolPA, Where did you buy the Thermotex infrared heating pad? Online or can I pick it up at the local pharmacy--CVS, Walmart, etc.? Thanks!
Posts: 648 | From northeast | Registered: Feb 2009
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