I am frustrated by this new development, although there have been many theories regarding what is going on with my shoulder.....the current consensus is FS.
My question relates to PT....if anyone has had this (my pain is intense)
1. How long did you have to go to PT for the shoulder specifically
2. How painful was the therapy itself (yesterday I had PT and it increased my pain level a lot.....I could not sleep all night)
3. What helps the pain? I need a break from this intense pain...it is very very difficult to function and I have three kids to take care of.
4. What was the frequency of your therapy (# of times per week). ?
I am used to constant pain but this unrelenting constant pain is really very difficult to tolerate especially since it is difficult to sleep so I never really get a break from it.
Thanks for your input.
Posted by Pocono Lyme (Member # 5939) on :
I had a frozen shoulder early on amongst many other symptoms prior to my diagnosis. Yes VERY painful!!!
I did PT 3x/week and that was very painful. I did this for 3 months with no improvement so it was discontinued.
Once I realized it was lyme that I was dealing with, I self medicated with doxy and then mino..
The shoulder started cracking, not painful cracks, good cracks. It got better. Unfortunately, the other shoulder then froze.
That one wasn't near as bad. The first shoulder limited my range of motion to nearly none. The second one not nearly as bad.
The only thing that helped me with the pain to sleep was to prop the affected arm on a pillow in the most comfortable position I could find.
Hope yours gets better soon. I know how bad it is.
Posted by Catgirl (Member # 31149) on :
I recently had an acupuncture treatment with moxa for my shoulder (really helped). After the acupuncture, it felt good enough for me to do some gentle exercise. I really wasn't sure about exercising (seemed counter intuitive), but to my surprise it helped my shoulder even more.
Posted by pme (Member # 31621) on :
Thanks catgirl and pocono.
I really appreciate it.
So you just suck up the pain? It is so distracting and I am trying to put it aside and not think about it....but it is so intense. I feel like there has to be something I can do.
Catgirl....the PT gave me exercises. I guess I will keep doing them, they just make the pain so much worse.
I guess I need to know how long I will have the deal with this pain and HOW to live with it?
Mine started after treatment/diagnosis....about 2 or 3 months into "real" treatment and has gotten worse ever since.
Posted by Catgirl (Member # 31149) on :
Maybe it's getting worse because your treatment is actually hitting it? My husband's should pain got worse once he went on tindimax. It eventually got better though. He says it's gone now.
There are some other things you can do too. Check out this link:
Tindimax is next for me but not before I complete another 6 to 8 weeks of cipro (that was also a concern with the shoulder pain and my MRI was kind of equivocal with regard to tendon tear).
Can you tell me if the tndimax worked for him in terms of improving on neuro symptoms?
Posted by gmb (Member # 23562) on :
I too had frozen shoulder develop for several months during early treatment of Lyme and Babs. I think it was more from Babs than Lyme while ramping up my first round of Mepron, but who really knows the cause.
It resolved on its own as my Rx treatment continued. No PT nor pain meds were taken, just fight through it.
Posted by Carol in PA (Member # 5338) on :
Consider treating yourself with pulsed electromagnetic therapy.
Pulsed Electro Magnetic Fields influence cell behavior by inducing electrical changes around and within the cell. Improved blood supply increases the oxygen pressure, activating and regenerating cells.
Improved calcium transport increases absorption of calcium in bones and improves the quality of cartilage in joints, decreasing pain dramatically. Acute and even chronic pain -also caused by osteoporosis- may disappear completely.
The SOTA Magnetic Pulser does this. I bought one several years ago to treat my painful knee, and it worked great.
I didn't use it again for a long time, until someone suggested that I try it for back pain. Wow, it works on muscle spasms like nobody's business, hah.
It reduces pain and inflammation. It worked on abdominal pain, esophageal spasm, sacroiliac pain, aching kidneys. I've even used it on a toothache.
You can buy it from the company, or from various vendors, including on eBay and Amazon. If you buy from the company, it has a 30 day return guarantee, and you can google to find a 10% discount code.
This was one purchase that I'll never regret.
Posted by pme (Member # 31621) on :
I have read that this can take up to 3 years to go away. Which scares me....as does the "just live with it" attitude. After PT yesterday I am in so much pain that with certain movements I feel like I am going to get sick. Is this normal?
Carol, I have to say that you have definitely suggested this technique before.....more than once. Maybe I should look into it. I am afraid of expense and that it won't work. You have obviously had some success with it though so I will definitely look into it. Thanks for your input.
Posted by Hambone (Member # 29535) on :
I had a frozen shoulder for 2 years. The first year I couldn't lift my arm at all, and if I tried to force it I had the most brutal agonizing pain shoot all the way down to my wrist, up my neck and it literally made me cry like a 2 year old. The second year saw it "unfreezing" and pain diminishing. I have full use again and never think about it anymore, but there is still just a tad bit of tightness.
What SAVED me was I bought a PE-1 infrared light for Lyme treatment. I figured I'd try it on my shoudler and see if it would help. The pain went away INSTANTLY for several hours but I still couldn't lift it. It was outstanding in giving me pain relief and I was able to sleep. It's expensive, but there are less expensive infrared light treatments online if you Google. They are excellent for pain relief.
Then, I ordered the Frozen Shoulder workbook (used) from Amazon and started doing trigger point therapy. I didn't realize how many trigger point knots I had across my back and shoulders and chest. I bought the Back Knobber to use to work on trigger points. It was when I started doing this that my arm started thawing out.
I feel for you. It was beyond brutal and I refused surgery because in my heart I felt it wasn't the answer and would make it worse. Just know it does get better but takes a long time.
I believe PT only makes it worse...but that's just me.
Posted by Hambone (Member # 29535) on :
I want to add, my frozen shoulder started just a couple months after starting Lyme treatment with Doxycycline. About a year before that, my husband (who does not have Lyme)took Doxy for a staph infection on his leg and he complained of a sore shoulder for a few months after that. It never froze, but he said the pain was awful and he didn't know why because he never hurt it.
Posted by annxyzz (Member # 20404) on :
Go to iherb and read serra peptase reviews , an enzyme discovered by a German doctor , Hans Neiper . There are literally hundreds of reviews written by people in pain with bad joints , pain in feet , and serious circu;latory problems, along with muscle issues. You might consider this as a possibility for inflammation and healing . There are also amazing reviews at amazon and vita cost . I was blown away by the results people were getting , some that were even unexpected ! Good luck - !
Posted by Catgirl (Member # 31149) on :
Pme, my husband said the tindimax helped, but he really noticed improvement on augmentum. He also did Feldenkrais exercises which he said really helped him.
You can download them (not sure how many there are), but here are some you tube videos (some are in a different language, but at least you can see what they are doing):
I was diagnosed with capsulitis in the face/jaw. I never knew what it meant...other than terrible pain.
Posted by annxyzz (Member # 20404) on :
I have had 2 incidents with stiff and swollen muscles from cipro . The thing that resolved it for me was 3 capsules of magnesium citrate in the evening , also helps with quality sleep .
The difference in my knees was amazing from the mag citrate . VERY HELPFUL IF ON quinolones ! ( I hate cipro) .
Posted by pme (Member # 31621) on :
I am actually taking Serra peptase along with methyl folate for mthfr gene mutation. I think it helps the abx with their effectiveness. Thank you so much
Also I appreciate just knowing that others know what this pain is like. It Makes me feel less like a baby and validates what I am feeling. That is huge. Thanks so much to all of you!
Posted by pme (Member # 31621) on :
Ooo...and I will try the mag. I am not sleeping due to pain. I am not sure I hate cipro....it has helped and I had shoulder pain before. I am not sure if it would have gotten worse anyway.
I went off fo a while but llmd is not convinced cipro is responsible and said I have to stay on it 4 to 6 months before adding Tindi....which she believes will unlock my brain. I need that to happen so badly.
Thanks all for your understanding of the level of pain and your helpful suggestions!
Posted by lpkayak (Member # 5230) on :
i will go back and read the earlier posts - im too tired to say much
but today was my 12th PT appt for possible torn rotator cuff...i see ortho monday to get PT results and decide what to do
my response to PT was inconsistent...sort of 3 steps forward , 2 back...but testing showed i did improve in range of motion
also...4 weeks into therapy i was given a steroid on the skin for my knee but i had a very bad reaction to that-and it made the shoulder worse
so now...the PT is telling ortho he wants to start me over again as if we are treating ac/frozen shoulder
he told me to look it up on net and see what i thought
he said some get better in 3 weeks...some 3 years!!!
tonight i am tired and sore and confused...tomorrow i will read above...if i forget to come back feel free to pm me and maybe i will be able to make more sense of this...im having trouble with so many other things but the shoulder is by far the most debilitating-and i was hoping for a clear cut cure...but it doesnt seem to be that way
OK-I LITTLE MORE CUZ YOUR QUESTIONS ARE SO RELEVANT:
. How long did you have to go to PT for the shoulder specifically
SO FAR 6 WEEKS, 2 X A WEEK FOR 3/4 TO 1 HR EACH TIME
2. How painful was the therapy itself (yesterday I had PT and it increased my pain level a lot.....I could not sleep all night)
THE LAST TWO TIMES MY PAIN LEVEL CLEARLY INCREASED. WHEN I BEGAN I WAS SLEEPING IN RECLINER...COULD NOT SLEEP IN BED. FOR A FEW WEEKS IN THE MIDDLE I WAS ABLE TO SLEEP IN BED ON THE OTHER SHOULDER . NOW I AM BACK IN RECLINER.
3. What helps the pain? I need a break from this intense pain...it is very very difficult to function and I have three kids to take care of.
WELL-ANTI-INFLAMMATORIES. I NORMALLY TAKE 1200 IBUPROFEN A DAY PLUS FISH OIL, AND OTHER SUPPS. ON SOME OF THE WORST PAIN DAYS I TOOK 2400 IBU AND IT DID TAKE THE EDGE OFF. PAIN WAS NOT GONE...BUT MUCH LESS. 2 WEEKS AGO I WAS IN ER FOR CHEST PAINS...WHEN THEY RULED OUT HEART THEY DX ME WITH CHEST MUSCLE PAIN AND GAVE ME A SHOT OF TORODOL...THAT HELPED FOR 3 DAYS. (IT IS A STRONG ANTIINFLAMMATORY USED AFTER SURGERY...BUT NOT REGULARLY CUZ IT IS BAD ON KIDNEYS)
I am used to constant pain but this unrelenting constant pain is really very difficult to tolerate especially since it is difficult to sleep so I never really get a break from it.
I UNDERSTAND THIS. I ALSO CANT PUT ON SEATBELT WITHOUT A LITTLE TOOL, CANT PUT ON DEODERANT ON THE OTHER ARM, CANT WASH MY BACK...IT WAS HARD B4 BUT I HAD A WAY I COULD DO IT-NOW CANT. CANT REACH BEHIND ME TO PULL SHIRT DOWN IF IT RIDES UP. I CAN SWEEP IF THE BAD HAND IS LOW ON THE BROOM BUT NOT THE OPPOSITE, CANT REACH IN FRIDGE, CANT PUT DISHES OR FOOD ON HIGH SHELVES WITH BAD ARM...IT GOES ON...HARD TO DO HAIR-I BEND AT WAIST AND SOMEHOW GET MY HANDS UP ENOUGH TO PUT ON SCRUNCHY, VERY PAINFUL TO PUT ON CLOTHES-I SCREAM OUT A LOT AND SCARE THE DOG CUZ THE AMOUNT OF RANGE I HAVE BEFORE PAIN CHANGES ...
AND I KNOW WHAT YOU MEAN ABOUT LIVING WITH CHRONIC LYME PAIN...BUT THIS IS MAKING ME EXHAUSTED AND GROUCHY AND ON EDGE. SO GREATFUL I DONT HAVE KIDS. I END UP YELLING WHEN THE DOG JUMPS UP ON MY LAP LIKE SHE ALWAYS DOES...SHES 10 LBS...BUT HER FEET SEND STABBING PAINS IN ME WHERE EVER THEY ARE...I AM JUST SENSITIVE ALL OVER...RADIATIN G FROM SHOULDER...AND ESP ACHY BACK FROM IT
HEAT HELPS BACK/ ICE HELPS SHOULDER WHEN THER IS ONE SPOT THAT HURTS A LOT. NOT WHEN THE WHOLE ARM HURTS
Posted by lpkayak (Member # 5230) on :
well-since reading this post i seem to be totally unable to get to sleep even tho i didnt get much sleep last night either-i keeping thinking of how many things add up to this being lyme related:
-it affects the connective tissue that ketes love -it happens to many of us with lyme and is often related to abx tx stirring up the ketes -there seems to be no rhyme or reason to treatment-maybe because no one is keeping a close watch on the use of abx along with all the other treatments(pt, steroid shots,
-antiinflammatories help
and look what i found on a non-lyme site:
Adhesive capsulitis has been indicated as a possible adverse effect of some forms of highly active antiretroviral therapy (HAART).
Cases have also been reported after breast and lung surgery
so-couldnt that mean an antiviral is killing somethingand /or a major surgery is striiting up ketes
all anecdotal i know-but compared to what you guys wrote above i dont think it makes sense to put any more time or pain into PT. i will ask PT about the light and magnetic machines...
i think it is just lyme and somwday many years from now they will look back and see how many things distracted us from just treating lyme
Posted by Carol in PA (Member # 5338) on :
Annxyzz suggested Serrapeptase. If you're already taking Serrapeptase, consider increasing your dose. This will reduce inflammation and pain, and you should be able to tell pretty quickly when the dose is high enough.
I've tried increasing my dose from 12 tablets daily to 20, and I could feel a difference.
Hambone suggested the PE-1 infrared light, which is similar to the SOTA LightWorks.
The PE-1 is much stronger than the LightWorks. Both will reduce pain and inflammation, and help the shoulder to heal.
After using both the LightWorks and the Magnetic Pulser, I think the latter works more quickly for pain.
Posted by pme (Member # 31621) on :
Kayak....I am so sorry you are going through this and that my post somehow kept you up last night. I don't know if I have as much pain overall as you do, but neck and back are definitely affected, plus I crack when I walk or anytime I try to move my shoulder above even a 45 degree angle. I think that your thoughts about the shoulder pain are in line with my LLMD, and I so relate to being "sore and confused". As far as shoulder diagnoses....I have had 1. "referred pain...from the liver being bogged down by treatment.
2. Shoulder impingement (a catch all) 3. Possible rotator cuff tear (still not ruled out) 4. Complication due to cipro 5. "Herx" effect (per my LLMD) 6. AC/Frozen shoulder
But despite the xrays and MRIs nobody can tell me what it is. So...I am thinking that maybe this is why there is different response to therapy. How can you develop a therapy plan without a definite diagnosis?
Also...I had a cortisone shot. It was awful and made my pain so much worse. It hurt just to breathe.
I am also confused by my PTs office, who I have been working with for a long time (7 years between myself and my daughter). They dont seem to be too concerned about my pain level. And they won't really commit to a program. It's kind of like if they can fit me in they will, but that's not what I need right now. They are a popular busy office in the area but still.......maybe I need another PT for this.
I am on the fence with PT. I am going to try it for a while, I have spoken to local folks (not with Lyme, but diabetics with AC/FS) who have improved with consistent therapy and I cannot afford to have my shoulder range of motion reduced any further.
I wish I could borrow a PE-1 or Sota machine.....finances are so tight right now, I am working only very part time.
With regards to serrapeptase....Carol wow....I only take 3 a day (2 am and 1 in the pm) so I will ask my LLMD about increasing the dose since that seems like a very small dose compared to what you are taking.
Thanks again for your understanding and advice. I am so grateful to know that I am not the only one who is going through this.
Posted by lpkayak (Member # 5230) on :
pme-you didnt keep me up. the pain did and the PT telling me to go look up FS on the net and what i found made me mad.
i finally slept-but when i wolk up i couldnt walk(they are also doing my knee ).. i decided after i read what i read on here and on non-lyme places on the net i am done with PT for this problem
for 30 yrs or more PT has mostly not worked for me. once a swedish PT gave me exercises to do at home for my lower back. i saw her 3 times and the problem was solved.
a few yrs ago i went to PT after falling off horse and SI joint was messed up. she fixed it the first day...saw me a few more times to review home exercizes and it was cured.
i have been going to this PT for 6 weeks-the first dx was impindgement...now they are switching to FS. im done. im mad at myslef for trying ducks again. i lost a full week thru the holidays fromt he steroid on the skin thing. now i am losing another week from not trusting myself.
i really appreciate the suggestions above about ultrasound and em therapy ans serra...i must get so ican at least walk in the house with out the walker and then get organized about those therapies...also -my mitochondrial supplement protocol makes a difference.
it hurts too much to sit here and even to use hands right now...but i cancled appts and will be living in the recliner for awhile.
good luck to u. i think you should pay attention to what helped the others on here...i dont think pt is good for this problem. its the same as fibro...dont know where it came from or what makes it better. only differenct is they say it can take 3 months to 3 yrs. forget it.
oh i hurt-gotta get back to chair...but guess what???? I HAVE A WORKING TOILET AS OF 2 HRS AGO!!!!! yeah me!!!