posted
These kind of questions are asked often here. Those of us on the one end hope those of you on the other end can help.
My main symptoms are pain. Rotator cuff injury like pain in my shoulders and muscle pain in my neck and upper back. Dr. B's guideline refer to it as the Lyme shrug. I also have lots of other things too.
Has anyone who has had similar symptoms seen improvement with appropriate abx therapy. At what point did you notice a difference.
Just thought I'd ask. Everyone is different, i know, but many of us have similar experiences. I have almost no neuro symptoms, unless you count constant pain as one so my LLND says I may recover or go into remission easier than those with those neuro porblems.
Posts: 199 | From utah | Registered: Jan 2009
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
My worse pain was in my shoulders and neck and went all the way down my arms into my hands. I lost all my range of motion. Couldn't even stand with my hands on my hips, like I use to do before LD.
Before the Lyme diagnosis, I was diagnosed with FM, and frozen shoulders. Perfect description because I couldn't even move them and they hurt so so bad. Also my hands hurt that way too.
After 10 months into treatment, they are almost back to normal. I have most of my range of motion back too. Amazing!! And the ducks told me that it would only go away with physical therapy and possibly surgery.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
posted
This was one of my first sypmtoms to get better... hopefully neuro will follow! Had very bad shoulder/neck pain and stiffness. It is much better after 10 months on orals.
And even though it doesn't feel like you should be moving it, one of the best things for me was yoga and strengthening exercises. I really think this helped a lot.
Posts: 453 | From TX | Registered: Aug 2008
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
It was sort of like no change for a while, like the first 6 months, then gradually over the last 3 or 4 months it started getting better. Now at 10 months I am saying "WOW"!!! It's a miracle!
Now if only this fatigue would do the same.
I still have pain in my lower body, but the lower is not nearly as bad and not as constant as the shoulders and neck were. That pain was horrendous!
I hope that gives you some hope!
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
posted
It was one of many warning signs. The pain got worse as the months went on. At times could not raise arm to put or take of shirt, would lie awake with extreme pain in shoulder joint. When pain started into chest, up neck, and over to left shoulder knew it was time.
Lucky, tested positive by CDC standards. Started teatment and within 6 or 7 months pain had eased, Two years later, not there, when I look back I hope I never have pain as was such.
During the 2 year period I have had pain in other areas of body, but as of now it is in check.
Posts: 108 | From maryland | Registered: Sep 2007
| IP: Logged |
bettyg
Unregistered
posted
hi willis!
nothing has helped me from day 1 of treatment where the pain really took off on abx.
also have had extensive physical therapy done and that didn't help. i practiced exercises religiously at first and then stopped; LAZY ME!
my frozen ice packs are the only things that help me numb my pain in that area and lower back.
best wishes to you for relief! hugs/kisses
IP: Logged |
posted
My biggest daily issues are severe neck stiffness and pain. I also get headaches almost every day.
I have been on Doxy 200 mg am and 100 mg pm and Flagyl 500 mg am and 500 mg pm since Nov.
Three weeks ago I added Samento.
Last Friday my neck was so stiff and sore I could barely move it. I couldn't look down at all.
Then on Sat and yesterday it was much better and and for a few hrs each day my neck felt almost normal. Today its pretty stiff/painful but not near as bad as Friday.
I hope this is the beginning of the treatment starting to help.
Posts: 27 | From Boulder, CO | Registered: Sep 2008
| IP: Logged |
posted
My ortho diagnosed me with Rotator cuff insufficiency (muscles no longer support shoulder)and frozen shoulder. The pain is quite intense at times and I did not find physical therapy to be of much benefit. I have no range of motion and I'm unable to use my left arm at all.
It seems that this is somewhat common with Lyme and I'm hoping that I will be one of the lucky ones and see some improvement with treatment.
-------------------- My comments on this site are not intended to be taken as medical advice as I'm not a physician. Posts: 206 | From Georgia | Registered: Dec 2008
| IP: Logged |
posted
thanks for you're reply. I hope the PM people can comment.
(Betty I get the feeling you are an angel, you suffer so much but always have something nice to say to everyone. You must have a good relationship with God)
Posts: 199 | From utah | Registered: Jan 2009
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Valium 10 mg helps me the most with this kind of muscle pain, it relaxes the muscles and works better than any pain med for me.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
bettyg
Unregistered
posted
quote:Originally posted by bwillis:
(Betty I get the feeling you are an angel, you suffer so much but always have something nice to say to everyone. You must have a good relationship with God)
thank you willis.
i say my prayers before going to sleep for the NIGHT/EARLY AM, and it almost never fails; i fall asleep before i'm done praying for those i normally do. so i try to remember who i forgot and where i left off.
1 night i know i started/stopped 4 times!! uffda.
i don't go to church but listen to services on radio at home.
yes, i try to always have something positive to say; some days it is a challenge!
IP: Logged |
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Flexeril might provide some relief in the interim.
You also might want to look into using a mini-trampoline (rebounder). Amazing what it can do for your frozen muscles and help detox you.
-------------------- 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
| IP: Logged |
posted
This is my worst symptom. It is what cause the misdiagnosis of fibromyalgia. I have been in treatment for over 3 years, and it has not gotten any better. I'm at the point where I'm not sure it ever will.
PT is the way I get relief. I go every week, plus do exercises in a very warm salt-water pool. Stretching helps, but does not hold for a very long time.
I use a relief gel called Sombra. Natural ingredients.
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
I had antibiotics for a month in August after diagnosis at my doctor's office. (I took a tick off in May but never got the telltale spot.)
I felt better and in December the stiffness and muscle inflammation/pain seemed to be returning.
I just went to the doctor and did another test which the office said was all normal but I'm not better and no treatment was offered.
Those of you that got better - did your doctors do multiple rounds of abx? Is that common?
Should I push for that here or seek a different doctor?
I'm exercising as that's where I see my performance dropping off and I want to be competing in six weeks so I'm anxious about getting things resolved. Thanks!
Liz
[ 04-04-2009, 06:13 PM: Message edited by: Liz in PA ]
Posts: 3 | From Southeastern PA, USA | Registered: Apr 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic