How can the pain never fluxuate, how can it just get worse and worse and worse. I don't understand. It never backs off. The shoulder, the forearm, elbow, wrist. Why does it just marsh on to hell with no let up!
I am losing more and more mobility of my shoulder with each passing week no matter how mcuh I try to stretch, etc. Sleeping is tough due to horrific shoulder pain.
Posted by txgirl09 (Member # 21612) on :
Did you have an MRI?
Hang in there! I'm sorry you are not getting any relief.
[ 02-08-2010, 02:53 PM: Message edited by: txgirl09 ]
Posted by sutherngrl (Member # 16270) on :
I had that exactly! It lasted for almost 2 years.
I went to physical therapy for my shoulders, because I lost all range of motion and the pain was horrendous. PT did nothing.
It took almost a year and a half of Lyme treatment for it to get better. I still get twinges of pain down my arms, but it is so much better than before and my range of motion is way better too.
Posted by saved10 (Member # 18413) on :
Richie....
Sorry to hear you are still not doing better....hang in there!
Posted by TerryK (Member # 8552) on :
Sorry to hear that your arm and shoulder pain is no better. So the trigger point therapist was unable to help and the MRI didn't show anything and you've been fully evaluated for a frozen shoulder? I think you were going to get an MRI for a frozen shoulder?
My arm was very painful for years and when I took a break from abx the pain magically went away. I also had swelling and hot spots in the arm and those went away too. I think the swelling and hot spots were caused by inflammation from toxins and the break allowed by body to clear out the toxins. I'm not suggesting you take a break, just wanted to mention it in case it was helpful.
Maybe trigger point work and lymph massage would help move things in the arm??
Terry I'm not a doctor
Posted by richedie (Member # 14689) on :
Yes, the MRI showed calcium deposits. I had an injection to break it up about one month ago. The doctor said the calcium deposits could be a coincidence or Lyme is causing or contributing to them. Either way, he is hoping the injection into the deposit will help the body break it up and eliminate it. We'll see. Other than that....my MRI is clean.
My Lyme doc said if I have microscopic inflammation it may not show on the MRI.
Posted by Lymetoo (Member # 743) on :
Been to an orthopedic doctor to have it evaluated?? Sorry, I don't remember if you've done that.
He/she will do an MRI. Sounds like a possible frozen shoulder.
----just read what Terry said... waiting for your response to her questions---
Posted by TerryK (Member # 8552) on :
You might want to try d-limonene oil rubbed on the arm and perhaps in pill form to see if you can further disolve calcium stones. Of course with the permission of your doctor.
I have had salivary stones (calcium and phosphate) in my neck for several years. I couldn't get anyone to do anything about them and they hurt and cause my neck to swell so I found via muscle testing that d-limonene oil would keep my neck from swelling and hurting if I rubbed it in 2X per day. I then started taking d-limonene in capsule form. I've been doing this for several months and while the block isn't gone it is so much better. I'm hoping with longer term use, the block will eventually go away.
Here is some interesting info about d-limonen and calcium stones.
I was diagnosed with frozen shoulders in both of my shoulders.
Posted by richedie (Member # 14689) on :
Yep, I saw two of the best orthopedic doctors in this area. They said no frozen shoulder. I used to be able to at least lift my arm above my shoulder now it will barely budge beyond parallel. The shoulder is also tender to the touch. Pain is so bad in the forearm/wrist I can barely type.
Even the doctor who did my injection for the MRI said he would baely be able to get the needle into the joint if it were frozen, and he had no problem.
How could Lyme cause Frozen shoulder anyway? Just in case it is that...what do I do to thaw? When you have frozen shoulder, do you also have cracking and clicking in the joint? Those noises are pretty bad now in my shoulder joint. Just reaching down to tie my shoe causes the shoulder joint to crack/click.
Maybe I'll see if the pharmacy has d-limonene oil.
I want a morphine drip!.
Posted by TerryK (Member # 8552) on :
For me, the cracking is inflammation. I also could not reach above my shoulder when my arm was problematic. I started to get muscle wasting in that arm from disuse because it simply hurt too much to use for reaching. I could use it for typing but not to reach for anything. Now it is normal so don't lose hope. Does your arm ever feel hot to the touch?
Terry
Posted by richedie (Member # 14689) on :
I keep hearing on youtube, watching frozen shoulder videos that it will show up on an MRI. But will it always????
It never feels hot to the touch at all. Still doesn't explain all my other symptoms, tender and sore arm muscles, wrist pain, elbow inflammaton and pain, hip pain, feet, etc.
I guess the first step....if it is FS...is rehab. I am a veteran with rehab because years ago I had reconstructive AC joint surgery in my other shoulder and had to go through intense PT to get it back to use. I also followed a program at home to get myself back. I could not move it an inch when it came out of the sling. If that was frozen shoulder....it was different than this. That was obvious from not moving it......but this time the other shoulder I have guarded that arm due to arm and forearm/wrist pain so maybe it crept up on me slowly.
During all of this I still lifted weights and did shoulder circles....but still guarded it while at work and outside the gym.
I have lots of experience working out, developing workout programs for people being a trainer for years and having 30+ books on the human body, training, exercise and nutrition so I am hoping I can put together a stretching rehab prgram for myself at home to see if it helps.
Posted by Lymetoo (Member # 743) on :
I would definitely try rehab.
Posted by seibertneurolyme (Member # 6416) on :
Have you been to a chiropractor? Could it be a torn rotator cuff? Hubby's chiropractor thought he had that -- from playing minature golf of all things. His shoulder was slightly out of socket and the chiropractor was able to manipulate it and that helped a lot. His pain was not nearly as bad as yours though.
It might be worth trying bee venom ointment. That is supposed to be anti-inflammatory and also may kill some pathogens. It only takes a very small dose. I rub this on the soles of hubby's feet at night -- seems to help his back pain and overall inflammation. He can't tolerate it rubbed on his spine, but it seems to travel up his body from his feet and help with pain.
I saw today where someone suggested rubbing coconut oil into sore areas of the body. I think I will try this on hubby. The monolaurin or lauricidin in capsules has made him herx and seemed beneficial.
Another possibility would be essential oil. Farrah's essential oil has helped hubby in the past with stomach pain. There is a recipe to make your own version posted here on LymeNet if you do a search.
As for the calcium deposits -- are you taking calcium supplements? With kidney stones which hubby has the newer research says they are actually caused by a lack of calcium -- the body is pulling it from the bones and it gets depositied in the wrong place. This definitely applies to hubby as he has very severe osteoporosis.
You need B6 and magnesium as well so your body can utilize calcium. Also vitamin D and many other trace minerals.
Terry -- Thanks for posting about the d-limonene. I definately plan to check into this.
Bea Seibert
Posted by richedie (Member # 14689) on :
Been checked for a torn rotator, yep was checked by a very good Chiro! I tried bee venom. I used more than a small dose...I used a lot!
THanks everyone. I feel like I have tried every oil, lotion known to humankind, Ugh!
I eat really well and under supervision I take extra Vitamin D, Calcium, chelated magnesium, etc.
The body will also pull calcium from the bones if you consume too much protein or acidic foods. Milk is extremely acidic as is meat so i always limit those.
Posted by tonesg (Member # 22757) on :
I have something similar - sore shoulder, arm etc...have come to be pretty sure it was caused by short course of levaquin, taken about a year ago. Been on salt/c for lyme for 3 years and had been 75% to 90% better until the levaquin, which was given post gallbladder surgery, not for lyme. Check out the following address: http://noquinolones.proboards.com/index.cgi Posted by Pinelady (Member # 18524) on :
No parasites in the long bones? Hyperparathyroidism?
You have had it so rough. I wish we could figure it
out. Biofreeze has helped me at times for a while.
Posted by richedie (Member # 14689) on :
But how could any of my pain be from levaquin since I had the pain in smaller amounts, before the levaquin??
Posted by richedie (Member # 14689) on :
If the pain gets any worse, I'll have to have the arm removed. This is NUTS!
Posted by lymebytes (Member # 11830) on :
My worst symptom has been widepspread neuro pain for years, seriously, there is nothing like it.
The abx you are on may be really flaring it. I found once, that when I backed down on the macrolide I was on, the symptoms subsided some. I wondered if I was in an ongoing herx or just totally irritating the nerves.
Just a note, Zith was absolutely intolerable for me and caused my husband to have new very painful shoulder and arm pain...no telling if it was herx or side effects, both of us got off it and found Biaxin more tolerable.
His pain subsided - but it took awhile about 6 weeks. He was in agony.
But - all of us are different.
I hope you find relief.
Posted by richedie (Member # 14689) on :
I have been off abx for one week and no change in pain.....my pain has been slowly increasing since getting sick with no sign of slowing through abx treatment. My doc thinks the pain is from Bartonells and we will not know till we treat Bart.
However we have to finish Babs treatment first or we will never get the Bart she says....
Posted by nenet (Member # 13174) on :
Hi richie, I see so many great suggestions, and read how informed you are about this kind of thing, so I doubt what I have to suggest is new to you, but just wanted to mention it just in case.
Have you tried Arnica gel? You can find it in massage oils too, but the gel seems more concentrated. I use the one in a with hazel base, and it does bring *some* relief.
I can't imagine it would do much to even touch your level of pain, but it might be slowly therapeutic, if you use it several times a day for a long time, just speculating though.
I see you mentioned you are on an antibiotic break, but have you eliminated all of your supplements as well? If I were in your state I think I would be looking at everything with suspicion until you have checked every possible item and ruled it out.
Kind of like the elimination diet to check for sensitivities. Remove all possibilities, and then reintroduce one new thing back into your regimen, waiting at least 2-4 weeks before adding something new. Also keeping detailed notes on any symptoms.
If you had the pain before taking Levaquin, and your pain worsened since then, it is still possible that you had an underlying condition that was worsened by the Levaquin. I would not rule this out.
There are things you can do to help repair Levaquin-type drug damage that are also beneficial for anyone with Lyme, so it's worth a try to add them to your treatment.
I really wish you the best of luck, and maybe you can find a pain management clinic that will prescribe you a morphine patch or similar in the meantime?
Posted by richedie (Member # 14689) on :
I tried arnica gel and still have a tube, but it does nothing. A big worry to me is the clicking and popping in the shoulder and elbow is getting worse.
I really doubt there is a supplement triggering anything or a food...that is so remote a possibility.
You said - "There are things you can do to help repair Levaquin-type drug damage that are also beneficial for anyone with Lyme, so it's worth a try to add them to your treatment."