posted
Hi, I've had lyme since 2003. Same story as most -misdiagnosed ,undertreated,presumed a psychotic,and then finally some help that has enabled me to lead a relatively productive life ,though not free of pain or problems associated with lyme . Just been diagnosed with shoulder impingement and physical therapy hasn't helped and I am now told steroid shots or surgery should be next step. neither an option I want to take considering that either could send me back to major neuro symptons or worse. any suggestions from anyone?
Posts: 46 | From south/central Pa | Registered: Apr 2005
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posted
like I said: [QUOTE] neither an option I want to take considering that either could send me back to major neuro symptons or worse. any suggestions from anyone?Posts: 46 | From south/central Pa | Registered: Apr 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
There may be other options. Many people get improvement from phsyical symtpoms impacting joints and soft tissue from Lyme treatment.
I had severe shoulder and back pain that was helped with Flexeril, a muscle relaxer. That, combined with myofascial trigger point release, then strengthening exercises, and Lyme treatment has made a huge difference.
I had to stop the Flexeril and it's back, but now its tolerable.
I don't know much about shoulder impingement, but have you seen a chiropractor? Maybe that will help.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
What is wrong with steroid shots Chuck?
Posts: 40 | From CT | Registered: Oct 2006
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Acupuncture can help with pain relief
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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posted
Thanks for the suggestions Aniek , Robi & Lymetoo - all may help and I will try them, but I am also worried about long term.
Impingement as explained to me, means a curvature of the shoulder bone, + (in my case) bone spur and calcification constantly rubbing on tendons and muscle causing chronic tendonitis.
I feel I may be looking at surgery as the only option for long term/permanent relief. Have any others had to have surgery and did it make your symptons of lyme intensify?What can I do ( to keep lyme from resurfacing)if surgery is my only option.
[ 06. November 2006, 12:29 PM: Message edited by: zing ]
Posts: 46 | From south/central Pa | Registered: Apr 2005
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Griff, Steroids supress your immunity even more and allow your Lyme to have a party. It's one of the worst things you can do.
I just had to have 3 steroid shots because of my lower back. I could not sit, stand or lie down without screaming, so there was no choice.
I immediately had to cut my Samento dose by 2/3 due to increased herxing, I got yeast and thrush, and I also got what appears to be herpes.
I have read somewhere that one shot can put back Lyme tx as much as 6 months, and one oral course of steroids can put it back by a whole year! I hope that's not true.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
I get shots in my shoulder and never had a problem with Lyme flaring up. Maybe some people are having a reaction to the steroid shots themselves like Hives and such, never heard or read any scientific studies on the shots and lyme.
Posts: 40 | From CT | Registered: Oct 2006
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posted
Griff...It is WELL KNOWN that steroids suppress the immune system. It will make the Lyme go deeper and make it harder to get well.
Some people have even had the Lyme resurface when it had been DORMANT.
zing....My shoulder is approaching the same fate, but I'm hoping to avoid surgery for awhile yet. The only thing that's really helped is the mangosteen, short of taking those dangerous NSAIDS.
Your shoulder may be too far gone, I don't know. Does it hamper your lifestyle alot??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Lymetoo I have days where I have very limited use of my arm , can't pick anything up, severe pain that radiates the whole way to my fingers and up my neck,& limited range of motion of my neck.
It is really impacting my daily life at this point.I am really afraid of surgery because minor dental surgery is what I think initially caused lyme to come roaring back to the surface a year after the initial tick bite and symptons.
I take mangosteen but not Xango brand, what I drink is tiago(mixture of other antioxidant fruits with mangosteen)maybe I need the high test stuff huh?? Posts: 46 | From south/central Pa | Registered: Apr 2005
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posted
Just wanted to tell you that I had a huge relapse as a result of getting steroid shots into my neck for pain. I could not believe how drastically they impacted my Lyme symptoms. I would never touch another steroid shot in my life!
Best wishes on finding good solutions.
Anneke
Posts: 364 | From California | Registered: Sep 2005
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posted
Here's my take on steriod use from personal experience.
I broke out into hive in 2003 (before i was diagnoised) and was given a "normal" dose 10 days of oral pretinisone-it didn't make the hives go away and i was given a shot of corizone-
My immune system completely shut down and I ended up getting shingles. Two days after the shingles on my face went away I broke out with a very rare type of acne which my doctors haven't even seen in woman.
I was put immediately on pretnisone to reduce the swelling in my face (as it was completely swelled) and as well put on accutane.
Despite my reluctance to be taken off pretnisone my doctors told me I could die because my acne was so serious (i.e. my throat could close)
They also gave me pretnisone injections in certain areas of my face.
We think I have had lyme since I was 12 and got a positive western blot igg/igm when i was 22 (2005) but when I was 12 my skin broke out this a rare type of ance 6 months after we think I was bit.
I was on oral tetracylines and accutane from the time I was 12 until I was 17 for my skin.
I believe it was the pretnisone that made me spiral downwards-and I ended up getting very serious illnesses (i.e. virtigo, mono, hives, shingles, kidney stones, gallstones, vommitted everything for 8 months, seeing problems, sensitivity to light and sound, ringing in ears, muscle and joint pain.)
Everyone responds differently to pretnisone and despite my weekly check ups with my dermalogist and blood work-I lost about 20 pounds on pretinsone which is unheard of-
I had "fake" energy. I literally didn't sleep for about 9 months. Everytime they lowered my dosage I got severly sick. I ate about 6 full meals a day and my immune system has been sacrificed to the point that I basically don't have one.
This again is just my personal experience but I would not reccommend taking steriods to anyone.
My suggestion is to look into alternative therapy-there are supplements and minerals you can take to reduce inflamation and swelling-accupuncture is what saved me from having knee surgery (i tore my acl)-I would find a good herablist, massage therapist, accupuncture, chiropractic-
For your shoulder what helps me with muscle and join pain is Bio-freeze (you can buy it online, just google it) and traumeel (oral and lotion).
posted
I am just recovering from shoulder surgery two weeks ago to solve impingement problem after a fracture which didn't heal correctly. Had arthroscopic acromioplasty. Have had no problems with my Lyme, which I've had since 1990, as a result of the surgery.
Two years ago, I had the other shoulder done. I had the calcifications in tendon also in addition to impingement at that time and that shoulder is perfect now! No pain and no Lyme complications.
Important to get a competent surgeon.
Good luck........Ellen
Posts: 25 | From northeast | Registered: Feb 2001
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posted
See? This is how everyone and every body is different.
I have plantar faciilitis or lyme in my feet. It gets so bad that I cannot walk without pain and wincing.
The only thing that helps me is to get cortisone shots in my heels. Then I have about 3 months of walking pain-free.
I did notice I herxed the day after, but realized it likely was due to the shots. But the herx left 2 days later.
I can't walk without the shots, so I've had to choose. I choose to be able to walk with no pain.
Like I said, everyone is different.
Good luck and I hope you choose the right path for you! :hug:
Posts: 867 | From PA | Registered: Jan 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
The good think is that you are aware of your lyme, and whatever you choose, you will know that if you get worse, lyme is likely the cause.
In my case, I had latent lyme in my body...I was totally healthy. I got a steroid shot to my knee and 3 weeks later I started falling apart with bizarre symptoms. It turned out to be lyme (after really falling apart for a year and half--I figured it out).
I will never get another steroid shot ever again.
My shoulder started acting up as part of my lyme symptoms. With time it got better. Is it possible that your shoulder will improve with time? I just try to be careful with it now...when it was bad, I couldn't move my shoulder much at all.
At the ILADS conference, one of the doctors presented a case where a woman had had lyme, but had been symptoms free for 15 years. She had knee surgery (cartiledge transplant, I believe)...that caused her lyme to come roaring back and the tissue in her knee tested positive for lyme. The surgery failed.
So...be careful, whatever you do.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I have shoulder impingement and it just plain sux. I had a steroid shot in 2004 and it made my lyme come back from being in remission. I was doing triathlete workouts daily when the shoulder went and then the steroid shot and I havent been well SINCE! I never swam another lap or ran another mile or biked on my brand new bike.
I would suggest a second opinion by a totally different PT. Not all PT's are created equal. I would also go to another ortho doc and get second opinion. DO not tell them what your diag is --let them do what they would do and see if it is helpful or not.
I guess I would go with surgery over steroids. but make sure steroids are not used IN the surgery as they sometimes ARE!! My steroid shot only took away the pain for 3 days. 3 DAYS!!! and I was back in the office begging for another one--the pain was so very much worse.
I a suffering greatly with a return of shoulder impingment symptoms out of the BLUE. I did nothing to bring this on physically. It is so very painful and frustrating, I really hear your pain! good luck, trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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bettyg
Unregistered
posted
Not to HIJACK your post, but a quick question.
I'm my 1st HIP INJECTION this week for my severe degenerative arthritis. Does anyone know if this is considered a STEROID? Can barely walk now and use cane full-time. Thank you for all replies or just PM me so I don't take away from this post of someone else. Thanks gang .
Mom had a frozen shoulder and had surgery, but she didn't have lyme; it really helped her. She used the empty milk jugs to exercise daily with.
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
AVOID THOSE SHOTS IF AT ALL POSSIBLE!
WAS A TOTAL DISASTER AND ERASED YEARS OF PROGRESS!
DISCUS THIS W/YOUR LLMD
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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Listen to Lymetoo. My mother-in-law had terrible shoulder pain from what the doctors think was arthritis.
My husband sent her a box of Xango to try. That was 5 or 6 months ago. She has almost no pain at all and my husband's two sisters said, (one is a nurse) whatever she does, don't let her get off the Xango as she has mental clarity and other improvments like much better sleep.
But best of all, the anti-inflammatory has helped her shoulder so much. She is 85.
posted
My 2 cents and experience.....I've had the shot in the shoulder. The only thing it did was make me feel %100 better. Did not effect anything else but my shoulder,so I guess it's your call
Posts: 408 | From NY | Registered: Jan 2006
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If yeast is under control - steriods will bring that out too!
Posts: 374 | From NJ | Registered: Aug 2006
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
It is your call.
I have had recently tonsillectomy and when was under anaesthesia, the surgeon injected me steroid without my prior permission. Forgot about my Lyme I guess. No evil effects were observed in the following weeks.
Also personally know one Lymie with some persistent Lyme symptoms who took large amount of steroid over several weeks with large dose of penicillin i.v. and was CURED. He has been clear of any symptoms for over a year since.
So this is just the other side of things.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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