I can't decide whether to do a steroid shot or not. I have had frozen shoulder for along time. First my right arm for 1.5 years and now my left for almost 8 months.
I am in agony. The doctor could also give me Prolotherapy which is how I found him. He is member of ILADS. He says to do steroid shot but I am terrified of the rest of going even more downhill.
Has anyone gotten shot for shoulder and been happy they did it?
Posted by randibear (Member # 11290) on :
not shoulder but neck. three of them. worst thing I've done. lyme spiralled out of control.
it's a crap shoot really. some people will do ok. others not.
difficult decision for sure
Posted by Keebler (Member # 12673) on :
- I would not. Absolutely would not. Are you sure your doctor is really LL? This surprises me that he would even suggest steroids before suggesting
ultrasound therapy, acupuncture, massage therapy, LED light wand therapy (now in many physical therapy offices), heat therapy, etc.
There are some very specific massage techniques that require special training / certification. It's well worth looking into someone with such training.
Ultrasound was the best alternative to steroid shots for many of my issues. After several steroid shots did me in, though.
Prolotherapy has helped many, too, but since that in invasive, I'd be sure the other approaches first got a fair chance.
Steroids can be the worst nightmare for those with lyme and they cause tissue / joint bone to actually dissolve over time. A steroid shot is not going to just stay at the injection site and it can hang around in the body for up to six months, causing immune issues, etc.
Be sure to read through the links here.
Now, if you've done all those other treatment modalities & a good PT and also rest joint approach - and good antioxidant anti-inflammatories such as turmeric, etc. and then it's still a problem, at least you would know the risks.
Likely, though, there are other ways to approach it that don't pose a risk of major relapse of long standing nature as steroids can pose.
Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. Links. -
Posted by Lymetoo (Member # 743) on :
Take a look at your DIET .. frozen shoulder is HIGHLY associated with a diet high in OXALATES.
It will help if you start now.
Prolotherapy may help.
Posted by Badtick (Member # 9794) on :
I had the same experience as Randibear. A small (10mg) shot in the neck brought Lyme out of remission. I went from 98% symptom free to being completely disabled with full body neuropathy in the matter of 2 weeks.
I feel your pain. It's a tough decision for sure. I was in agony for several months leading up to it. I went back and forth on the decision many times as I knew my past with Lyme.
I was not on antibiotic therapy at the time of the shot . Maybe if I was it would have worked out differently.
Posted by map1131 (Member # 2022) on :
Myofacial Release is another therapy I would recommend. There is someone that can help you without doing the steroid shot.
Pam
Posted by Lymetoo (Member # 743) on :
Did you go on You Tube and look at therapies for frozen shoulder?
Posted by Keebler (Member # 12673) on :
- Pam,
Merci Beaucoup for suggesting (the name I could not recall) "Myofascial Release"
This was one that I mentioned required special training and certification. Be sure anyone who uses this technique has that.
my voice, here - a full body approach, works on the entire skeleton as one bone is connected to another bone, and on and one.
In a way, this also involves trigger points
This type is excellent for those with lyme as there is no sudden twisting of the spine or neck - which should never be done with some who deals with lyme where the spine might be infected / inflammed / swollen -
Posted by Cockapoo1996 (Member # 14238) on :
He told me he was one of first doctors to join ILADS. Knows famous Dr. B who wrote guidelines. Only reason I would even ask this. I've said no to more steroid shots in last 2 years than you can imagine.
He said almost exact opposite to what you experienced and what I always heard. Is local and won't affect Lyme. I'll keep my appointment tomorrow but now I don't know what to do.
Feeling so desperate right now but I know there is always more horrific symptoms with Lyme and last thing I want to do is stir something else up.
I spent a ton on my other arm. I did acupuncture, PT, all kinds of machines the pt has. Took so long anyway. Maybe I just need to wait 1.5 years and this arm will get better. It's just so painful. Nights are the worst. And I read it could take 3 years. The other arm is 95% better. No pain when moving.
I once checked out oxalates but not recently. I honestly think this is viral or bacterial in nature. Almost as soon as it left the right arm, it jumped to the left.
I decided I am not getting the shot tomorrow. I do need to take a lot of otc pain killers but hopefully that is the lesser of two dangerous drugs.
Posted by Keebler (Member # 12673) on :
- " Is local and won't affect Lyme." (end quote)
Neither is true. It's just is not. Not in all my reading and not at all in many of my own steroid shot experiences. Shots in my foot set me back years - years regarding lyme & co. More than once as I was looking back after reading the articles in that links set.
Mood also can really take a hit.
Just in case you take ibuprofen, that can cause more pain due to its constriction of blood vessels all through the body, not just the kidneys.
i'm sorry you deal with all this, really. And if you have decided not to do the steroid shot, wonder what good the appt. tomorrow will do unless there are other things to discuss on your list, too.
The thing is that I really question his expertise on other matters if he thinks steroid shots stay in the shot location or can't affect lyme.
Best of luck to you in finding what has a better chance of working without severe risk on many levels.
You say he knows Dr. B - that may be true but it does not make him a "true LL" doctor - apparently he missed this:
Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses
16th edition, Copyright October, 2008
Joseph J. Burrascano
Excerpts:
P. 4:
. . . More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids. . . .
[insert: intraarticular = joint injection]
From page 12:
. . . More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants. . . .
Page 20:
. . . and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example). . . . -
Posted by Keebler (Member # 12673) on :
- A newer article not yet in the Steroid Links set:
STEROID USE CAN LEAD TO LONG-TERM TREATMENT FAILURE FOR LYME DISEASE PATIENTS
Several studies have documented the consequences steroids pose to patients with Lyme disease.
Most recently, researchers from Massachusetts Eye and Ear and Harvard Medical School published a retrospective study which described an "association between corticosteroid use in acute LDFP [Lyme disease-associated facial palsy] and worse long-term facial function outcomes." [1]
by Daniel J. Cameron, MD MPH - 09/13/2016
[Read, or download full article] -
Posted by Rumigirl (Member # 15091) on :
If it were me, I'd do the Prolotherapy, rather than the steroid shot. That can make it better in the long run. And, if you need to, take some pain med to help with the pain of the prolo (but not a drug anti-inflammatory).
I agree with the myofascial release, or similar treatment.
Posted by Lymetoo (Member # 743) on :
Go to the Trying Low Oxaltes Facebook group and ask about frozen shoulder.
Posted by Carol in PA (Member # 5338) on :
PEMF.
Posted by Cockapoo1996 (Member # 14238) on :
Thanks Tutu. Worth a try for sure! I'll let you know how it works. Says 3 weeks needed.
Posted by Cockapoo1996 (Member # 14238) on :
So doctor was very caring but he believes Lymes is auto-immune. He gave me exercises which I am going to do. Seems like only way out of this mess is to endure horrible pain.
Lymetoo, now I remember why I never tried Oxalates diet. All the info is conflicting. One says blueberries ok, other says no. That is true for so many foods. How do I know what to follow?
Posted by Lymetoo (Member # 743) on :
Trying Low Oxalates on Facebook .. at least avoid the ones the lists AGREE on. Susan Owens on TLO is the authority and is the only one to do real research on it.
Avoid spinach, potatoes, chocolate, (grains also contain them), berries (blueberries might be lower than others), that's all I can think of right now.
frozen shoulder manipulation under anesthesia
Posted by Rumigirl (Member # 15091) on :
He says Lyme is autoimmune??!! Whaaat? That's crazy. Yes, one can develop an autoimmune condition from Lyme, but it's a bacterial infection!
Also, trigger point therapy could help A LOT!! Either the injection version, or manual version (bodywork). You can even learn how to do it on yourself with various tools. There is a lot of info on this online, plus in books.
Of course, it would be easier to have it done to you until much better. Trigger point injections can be super helpful quickly. But then, so can various kinds of bodywork.
Posted by randibear (Member # 11290) on :
make sure trigger point injections are not steroid.
Posted by Keebler (Member # 12673) on :
- UPLEDGER body mechanics manipulation is where I would start. Much kinder on the body, gets to the real issues and is not going to rip body tissue - or cause more scar tissue.
Some kinds of massage techniques- specifically the myofascial work - can help break up scar tissue, too. -
[ 11-03-2017, 12:36 PM: Message edited by: Keebler ]
Posted by Badtick (Member # 9794) on :
Autoimmune = Immune attack on our own cells.....that are infected with pathogens. Posted by bullmastiffluvr (Member # 50250) on :
quote:Originally posted by Cockapoo1996: I can't decide whether to do a steroid shot or not. I have had frozen shoulder for along time. First my right arm for 1.5 years and now my left for almost 8 months.
I am in agony. The doctor could also give me Prolotherapy which is how I found him. He is member of ILADS. He says to do steroid shot but I am terrified of the rest of going even more downhill.
Has anyone gotten shot for shoulder and been happy they did it?
Posted by bullmastiffluvr (Member # 50250) on :
I did have an injection for frozen shoulder multiple times. I don't think it helped me much. I had a year of physical therapy and I had a machine I laid on 3 times a day which stretched my shoulder and arm. This has been 10 years ago and I don't know if they do it any more but it did fix my problem. I regained all but 10 percent of my rotation. I had been down to only able to raise my arm to shoulder level. Good luck to you hope you feel better soon.
Posted by Sonoma 1 (Member # 50187) on :
I've had frozen shoulders on both sides. First one had steroid injection that didn't help at all.
Both times I made a full recovery from good physical therapy work. They laid me on the table and stretched /manipulated my shoulder little by little.
It took about 6 months for the left and 9 months for the right. Lot of $ in copays going 2x a week. It was a study in pain tolerance. At least that was how I learned to tolerate it.
The pain was so intense I nearly lost consciousness. I made full recovery on both shoulders, and I'm no spring chicken.
I was, afraid the manipulation under anesthesia would do permanent damage. There's a diy book out there somewhere.
I learned the key is that when your shoulder starts to freeze, recognize it and start stretching it and arrest the progression before it gets too bad.
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