posted
My first posting....so nice to find answers and support. Newly diagnosed with lyme after 5 year search for answers. 4 neuros, cardiologist...the list goes on. My blood work was negative including the WB done by Quest. Finally seeing Dr. D in Boston who has started treatment. My question, has anyone experienced severe shoulder pain?
Posts: 46 | From Maine | Registered: May 2005
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posted
Yup, that is 'one' of my lingering "come and go" pains from the get-go. Sharp hot ice pick poking type pain sometimes.
I hate the way any doc (except my LLMD, but he's a Lymie, too, so he gets it) looks at you when you try to explain the feeling....but you tell another Lymie and ...you get "Yea, that's it!!!!!"
Welcome to Lymenet...you will find alot of good informed help here. A really great bunch of Lyme educated people, and will help you in anyway they can.
I have a brother that lives in Maine and he says "they say we don't have Lyme here", when I suggest he get tested for Lyme disease because of some unexplained symtoms he's had.
Good luck and do keep posting and asking questions.
Have a great day, ~laserred~
Posts: 493 | From MidWest NorthWoods | Registered: Jan 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Cher,
Oh yea! Shoulder to neck to headache. It happens especially when I'm tired.
Used to be everyday but with antibiotics I've been feeling better.
Heather
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
Thanks for the response....so hard to explain to people how bad you feel when your look "normal". Many people have responded in the same manner to me when I tell them I have lyme...It is not in Maine yet...LLMDs are few and far between in Maine and that is the problem.
quote:Originally posted by laserred: Yup, that is 'one' of my lingering "come and go" pains from the get-go. Sharp hot ice pick poking type pain sometimes.
I hate the way any doc (except my LLMD, but he's a Lymie, too, so he gets it) looks at you when you try to explain the feeling....but you tell another Lymie and ...you get "Yea, that's it!!!!!"
Welcome to Lymenet...you will find alot of good informed help here. A really great bunch of Lyme educated people, and will help you in anyway they can.
I have a brother that lives in Maine and he says "they say we don't have Lyme here", when I suggest he get tested for Lyme disease because of some unexplained symtoms he's had.
Good luck and do keep posting and asking questions.
Have a great day, ~laserred~
Posts: 46 | From Maine | Registered: May 2005
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
If you do a search of the migratory flightways of birds you might see one way it could have reached Maine. Also, it's not supposed to be in Canada but they have an excellent website www.canlyme.com and several support groups.
I gave my sisters symptom lists in the hopes they might get a Lyme Western blot but I don't think either one did. There's a good symptom list at the Canadian lyme website. If you have 20 or more that strongly suggests Lyme.
rosesisland2000
Frequent Contributor (5K+ posts)
Member # 2001
posted
I complained for one full year to my reg. PCP about my shoulder pain...I even had my LLMD perform Prolotherapy (look it up) to no avail.
Finally after that one full year and two Prolotherapy treatments, I was sent to Physical Therapy where the third therapist to work on my shoulder found a significantly large lump.
The lump turned out to be a rather large bone spur, that subsequently tore my rotator cuff. I had surgery for that in March of last year. It has taken me almost a full year to get the full use of my right arm, but, alas, I am not in pain anymore.
The repair of a rotator cuff is very harsh and requires extensive PT afterward. I had to have 4 months of 3 times per week of PT to be able to use my right arm. I'm right handed and when it was before the repair, every time I moved my right arm, it would hurt and hurt bad.
Good luck, just writing to let you know of another thing that could be needing a look/see. I know of several Lymies who have had bone spurs in the shoulder.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
My wife has bad shoulder pain right now she had to start abx's again relaps.
Newbies List 2005
WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. "Lyme literacy" means, first and foremost, knowing how to diagnose the disease accurately. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead. Lyme Disease symptoms 2005 Lyme Symptoms 2005 Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer. Support Links LLMD's
posted
Thanks so much for the info. I have been debating going to my PC to get my shoulder checked. Not sure he knows I finally got a diagnosis of lyme...he has tried for 5 years to figure out what is wrong with me. He gets an A+ for trying...just isn't LL. I emailed Dr. D to get his oppinion with regards to the need to get it checked or not. He said it was a good thing that the lyme is coming out? (something like that) And if there is not other cause, wait it out. It only hurts when I move it just right...undressing, and a million other needed tasks. I think out check out the possiblity of a bone spur. Again thanks.
quote:Originally posted by rosesisland2000: I complained for one full year to my reg. PCP about my shoulder pain...I even had my LLMD perform Prolotherapy (look it up) to no avail.
Finally after that one full year and two Prolotherapy treatments, I was sent to Physical Therapy where the third therapist to work on my shoulder found a significantly large lump.
The lump turned out to be a rather large bone spur, that subsequently tore my rotator cuff. I had surgery for that in March of last year. It has taken me almost a full year to get the full use of my right arm, but, alas, I am not in pain anymore.
The repair of a rotator cuff is very harsh and requires extensive PT afterward. I had to have 4 months of 3 times per week of PT to be able to use my right arm. I'm right handed and when it was before the repair, every time I moved my right arm, it would hurt and hurt bad.
Good luck, just writing to let you know of another thing that could be needing a look/see. I know of several Lymies who have had bone spurs in the shoulder.
Rosemary
Posts: 46 | From Maine | Registered: May 2005
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posted
Thanks....I do feel welcomed...it's like finding a new found family. The support is wonderful.
quote:Originally posted by treepatrol: My wife has bad shoulder pain right now she had to start abx's again relaps.
Newbies List 2005
[b]WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. "Lyme literacy" means, first and foremost, knowing how to diagnose the disease accurately. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead. Lyme Disease symptoms 2005 Lyme Symptoms 2005 Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer. Support Links LLMD's
posted
Lymetoo Thanks...I knew there had to be a better way.
Posts: 46 | From Maine | Registered: May 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Shoulder pain can be from Lyme. The actual cause of the pain can vary. I have had debilitating shoulder pain that referred to my hands and wrists.
My pain was caused by inflammation of the muscles, resulting in the muscles tightening tremendously. It's not completely gone, but I've got it under control. I am constantly on a muscle relaxer and went through months of hands on physical therapy (relaxing the muscles not strengthening) and worked slowly towards strengthening exercises .
It can also be caused by athrtitis/joint inflammation, tendon inflammation (tendinitis), something like a spur or a compressed nerve. I sometimes think physical therapists are best at figuring this out, because they know much more about how bodies work than the doctors. But it needs to be a good therapist.
Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
So new to all of this. I know it is going to take years to get better . Can this severe shoulder pain be a herx? I just finished 5 weeks of antibiotics. I can't sleep it hurts sooooo bad. I thought I would go nuts this weekend and found some naprosyn in my vast array of meds given to me over the years with all my dianosis that were not! I tried it and it seems to be helping some. Anyone have any advice on what to try? I teach 7th and 8th grade and boy has that been a challenge lately. It is hard enough to drag myself to school being so fatigued but this shoulder pain is the worst I've had to deal with....Well pain wise anyway. Just needed to tell someone who would understand. Cher
Posts: 46 | From Maine | Registered: May 2005
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At times it is tingling, then buzzing, then this BIZARRE (as if the first two werent) boring pain like there is a radialogical tumor in there, but there isnt.
We thought I had Thoracic Outlet Syndome (tos)for months. Where the nerves of the neck and chest (brachial plexus)send crazy signals to the rest of your arm that freakin hurt even though it is NOT JOINT PAIN. Thought it was caused from too much swimming.
No other joints seem affected.
Been treating lyme for 15 yrs. Off and on. have had years of no symptoms. Possibly this flare is due to steroid shot I got in the shoulder in December. or untreated Babs.
I teach elementary art so I know what you mean. I had to be put in a sling-like thing for while this winter and although I could barely teach, it was at least a VISUAL sign to others that i was suffering.
I hear your pain. Do you have summer break soon?
Best, trails
PS. I had a nerve conduction study that did come back as having nerve root damage in cervical spine. The roots of your nerves in your neck can cause WHACKED OUT SH** to happen in your shoulder and arm. Lyme can get in the nerve roots and cause this to happen. Peripheral neuropathy.
Posts: 196 | From Mesilla, NM USA | Registered: May 2005
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posted
Trails Summer vacation seems like a long way off right now. Too many snow days puts us in school until June 27th...ugh!
I've thought about the sling...for both reasons....the visual clue...and pain relief. Seems like when I hold it still it just throbs which I can deal with. It's the very sharp pains with movement that put me over the edge. Trying to get in for a massage to see if that will help. Thanks for "hearing" my pain Cher
Posts: 46 | From Maine | Registered: May 2005
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
YES!
I get right shoulder pain that spreads up into my neck , jaw and then subsequently my ear. Everything swells and I cant turn my neck without feeling the tightness.
It actually gets SO TIGHT that when I do turn my neck, my lip pulls down to one side.
You betcha, lyme can cause this. BUT DO get it looked into to find out WHAT went wrong.
I am now discovering that my shoulder pain has driven me postal and depressed and I really need pain relief from it.
Make sure ya get some.
Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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I didnt use a sling, it was actually a thing for people with broken collar bones...you know, keeps your arm from moving and sort of stable?
As far as meds for the shoulder pain...the ONLY thing that worked for me was Valium. And heavy drinking. NOT COMBINED. and not a joke. I am NOT a drinker, but I swore by a few beers calming down the pain. Ibuprofen 800mg did NOTHING. All others barely touched the pain. Even steroid shot, which you SHOULD NOT have if you are a lymie, did not work more than 3 days.
DONT DRINK ALCOHOL WHILE TREATING LYME! For real, it will whack out your tum and apparently lyme loves alcohol.
Also, I started taking Elavil 10mg at night and that helped with the sleeping and some of the pain. It is an anti-depressant, but is used for nerve pain in low doses. I liked it, and I think it helped. It helped with sleeping for SURE. Had to stop because of low sodium. Ask your doc about it?
Yeah, end of june is too far away. We only have two weeks left here. But we start the first week of August.
keep in touch! Trails
Posts: 196 | From Mesilla, NM USA | Registered: May 2005
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posted
Hey Trails Thanks for your thoughts. I had a massage last night. I so wanted that to be the cure-all. I have another appointment with my PC today. Something is clicking/grinding in my shoulder with the slightest movement. Not sure if that is a common issue with lyme or not but it hurts like *&^(*&! I'm taking the morning off. So hard to teach through the pain. I'm so not use to using sick days...well up until all my issues started 5 years ago. One day at a time. I'm going to take your recommendations with me to the docs today. So nice to have this place to unload....no one in my everyday world really understands what I'm dealing with...well maybe my husband. Cher Posts: 46 | From Maine | Registered: May 2005
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rosesisland2000
Frequent Contributor (5K+ posts)
Member # 2001
posted
If you do find out that you do not have a bone spur there in your shoulder, as others have said above, it just may be your Lyme symptoms coming out.
If it is only Lyme causing your problem, I will suggest trying Prolotherapy, ( www.google.com ) and use the keyword, Prolotherapy. Many of us posters here have had that done by our LLMD's and it works wonderfully. Two sessions and my carpel tunnel in my wrist were gone...that was about 1.5 years ago and it hasn't come back.
as for my bone spur and torn rotator cuff, it is now fine after surgery and 4, count 'em, 4 months of physical therapy, the shoulder is fine. I'll never play tennis again, but, oh well, right?
posted
Thanks for all those who have offered advice. I went to my PC this morning. He wanted to give me a steriod shot but from what I've read on many of the postings here that's a no no for lyme....correct? I told him about my research. He gave me a shot of marcain for pain....not much help. I had another massage tonight....it at least helps me sleep. I'm going to check out the info on Prolotherapy...thanks Rosemary. This site is such a blessing!
Posts: 46 | From Maine | Registered: May 2005
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quote:Originally posted by Cher44: He wanted to give me a steriod shot but from what I've read on many of the postings here that's a no no for lyme....correct?
I wouldn't do it. Like trailsgrl said, the relief will be very temporary and could really make the Lyme issue worse.
I've had tons of prolotherapy, and even though it's painful, it was NOTHING compared to the pain I was in already. [plus they drug you up pretty good! ]
My worst pain was sciatic nerve pain, and it worked for that very well....also had him do my knees, shoulders, hands, feet, hips, neck and back.
I don't think we left any stones unturned! But of course, this was done over MANY sessions!
You might want an orthopedic dr see if it's a bone spur or rotator cuff problem. My left shoulder still gives me trouble.
Teach? Seems like not much lately. Just kidding my students are wonderful and I am educating them on lyme to the best of my ability. They know when I'm having a bad day and are pretty compassionate. Once I tell you what grade I teach you might find that hard to believe but they help to keep me going. I teach 7th and 8th grade science and math. They're a wonderful crew! I thing the orthepedic doc might be a good idea as well. I've emailed my LD to correpond with my MD maybe that will help. Cher
Posts: 46 | From Maine | Registered: May 2005
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