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jennie48
Regular Member


Date Joined Sep 2008
Total Posts : 293
   Posted 3/21/2011 8:31 PM (GMT -6)   
Hello everyone. I am from the Lyme forum. I went to a rhumatologist cause i have always had chronic pain in my joints and achy. my pain starts in my kneck and travels down the spine to mid back and spreads into my shoulder blades and top of shoulder. I have always had achy pain in theses areas but went away for a few years.
 
I have had Lyme for 3 years now and in the past year these symptoms have got worse and unbearable at times. My rhumy sent me to Physicle Therapy. I have gone about 4 times and it feels good to get the massage done but i am still in pain. She also told me that I hardly have a curve in my kneck, that I have sighns of arthritis in my kneck that a 40 year old would show and I am 32. also that my kneck doesnt line up with my right shoulder.
 
But also I am on no pain meds and suffer all day long. The only reliefe I get is at night when I take advil PM so that I can sleep. I was loosing so much sleep for months that I could hardly focus on anything and make mistakes at work.
 
I get pain in my front shoulders almost feels like the collar bone and when I push my shoulders back it hurts. I am soooo sick of being in pain. I want to ask for pain meds but i dont want to get addicted and also I dont do well on meds at all.
 
I been off my lyme meds for 2 or 3 months and I am feeling better except for this spinal pain. I am starting to think that I still have Lyme bacteria and its built up in my spine. I just dont know what else to do and when I will feel normal again. I cant even work out and get back in shape. I did some light pilatis the other morning and was in pain for 3 days with my bones and joints ;( then I get afraid to try again and give up. I can only walk..
 
Sometimes when i do just walk my shoulders feel heavy and start to hurt I can never win tooo many pains... thank you for listening ;)
 
Jennie turn

Chutz
Forum Moderator


Date Joined Jan 2005
Total Posts : 9258
   Posted 3/22/2011 1:52 AM (GMT -6)   
Hi Jennie!

And welcome to the Chronic Pain forum! Wow, you are suffering so much and you shouldn't have to. I would suggest that you get another opinion on your health problems....start fresh and see what's going on. Do you go to a family doctor, PCP? That's where I'd start if you haven't already done that. I'm guessing that you have already gone that route since you go to a rheumy.

The other suggestion I have is to get yourself to the nearest university/teaching hospital. This is where the majority of research in our country comes from so if you go there for health care you are getting the very best. They won't put you out the door because they "just don't know". You have a wonderful one in Providence. In the Chronic Pain 101 thread there is a link to a listing of university hospitals around the world. Below is a link to the one nearest you. You can call them and ask for a referral to a doctor that best suits your needs.

In the mean time, there's no reason to be in this much pain without some sort of pain control offered to you. Ask your doctor about something to help ease your pain. It's a very reasonable request and it's also his responsibility to help you find a solution. I hope you get some relief soon.

Hugs,
Chutz

en.wikipedia.org/wiki/Rhode_Island_Hospital
Moderator on the Fibromyalgia and Chronic Pain forums
~*~*~*~*~*~*~
Daily Donnybrook: Fibromyalgia, Insulin Dependent Diabetes. Ulcerative Colitis, Rare form of Dermatitis, Collapsed Disk, Osteoarthritis (especially in right hand and neck) and a couple of other adjunct agitations.
~~~~~
Against the assault of laughter nothing can stand.
Mark Twain

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 3/22/2011 4:14 AM (GMT -6)   
Hello Jennie48!

Welcome to the CP forum!

I know very little about Lyme disease, but I do have a good friend here that has it, and I'm sure she is on the Lyme board. Maybe you have met her? NassaLady! wink

She has a blog and has written several Lyme related articles. JoAnn is pretty smart, and is a scientist,....in fact she is very smart...way above my head, but She knows how to come down to my 5th grade level when needed! smilewinkgrin

I will ask her tomorrow if she knows you, and maybe you two can visit. She is research heavy in the Lyme area...trust me on this! wink


One thing I know for a fact is that Lyme mimic's several other health problems, so when you said you were off of your Lyme med's, it makes me wonder if some of your problems are related to it.

Take care, and hopefully you already know of NassaLady, and can tap her on the shoulder for some help in this area.

SE

wink

JCG32
Regular Member


Date Joined Dec 2010
Total Posts : 62
   Posted 3/22/2011 5:50 AM (GMT -6)   
Hi. I agree about finding a teach hospital. My best pain doctor came from one and he was even better then Cleveland Clinic. Have you thought about seeing a pain doctor? I was in a pain program with a gentleman who had Lyme disease. They were working with him to find meds that are not narcotics but could also give him relief. Now I don't know what they were but there may be that option too for you.
As for activity and then being in more pain and then being scared. Trust me I can relate to everything you said. For me starting very very slow and building up time etc has helped. One it makes it easier on the body to adjust and also mentally too. That is how I started my walks by building up 5 minutes a week. It sounds so slow but overall it worked for me.
 

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 3/22/2011 6:45 AM (GMT -6)   
Hi jennie
 
Welcome to the Chronic Pain forum. I am so sorry that you are suffering so much.
 
I hope that you are able to get your illness figured out and find some good doctors to look after you.
 
Esp. some pain doctors to get your pain levels down.
 
You will enjoy the group of kind people here.
 
Come back and post to let us all know how you are getting along.
 
Once again, nice to meet you.
 
SUZANE

One day at a time!!

Miss Blossom
Regular Member


Date Joined Mar 2011
Total Posts : 27
   Posted 3/22/2011 6:56 AM (GMT -6)   
Hi Jennie,

Chronic Pain is new to me and I am new to Healing Well. I have been suffering from pain for almost a year now because I have frozen shoulder in 2 shoulders. They told me that the pain will last 2-3 years while the condition runs its course. I am also on minimal med, but I am rethinking my approach to my pain. The pain is starting to break me mentally and emotionally as well as physically.

I have gained 40 lbs from being less active, I cry all the time and I am starting to be overly emotional at work. Pain is the route of the problems, so I am actively looking for some type of regiment that will help alleviate my pain and raise my mood. I am afraid of how the meds will change me, but if the pain is going to change me anyways, I might as well be more comfortable.

I also agree that teaching hospitals are the way to go. They are on the cutting edge and never get stale.

Welcome and good luck,
Cheryl

jennie48
Regular Member


Date Joined Sep 2008
Total Posts : 293
   Posted 3/24/2011 7:59 PM (GMT -6)   
Thank you everyone for your respnses and all the advice. I never heard of a pain doctor befor and will look into this. Also never of heard of going to  a tech doctor. I have read it on the 101 chronic pain poste the first time the other day.
 
I went to therapy on tuesday and she told me i should try the treadmill or bike till we can loosen up my back and kneck then try to strenghthen thoses areas. My other therapist did some minipulations on Wend, and my kneck feels a bit better but had headaches after wards which she told me i will have. My MD knows I have lyme and going to a rhumy... My lyme dr doesnt know cause I have not seen him since I went off my meds and which I do want a second opinion and the rhumy agreed on that.
 
I was also told by the therapist on tuesday that its my peck muscle are what is affecting the pain in my shoulder in the front hmmm I just dont why I am having all this pain. I dont lift nearly as much as I used to when I had my old job and not on my feet 8 hrs aday. I sit down most of the day and dont lift a ton...
 
thank you again every one....
 
screamingeagle I will have to look on the lyme site for your friend.. thank you ;)

jennie48
Regular Member


Date Joined Sep 2008
Total Posts : 293
   Posted 3/24/2011 8:06 PM (GMT -6)   
chutz.. How do I get an appoinment with the hospital for teaching... How do I go about it I guess is what I am asking for, when i call do I ask for a cerntain department or section of the hospital for a referal. I also have heard that this hospital has a Lyme disease lab there as well....Thank You

Post Edited (jennie48) : 3/24/2011 7:09:44 PM (GMT-6)


Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 3/25/2011 12:04 AM (GMT -6)   
Hello Jennie!

I will alert NassaLady to your post, and see if she will shoot you an email as well. She is a very smart lady and is well versed on Lyme Disease. I think you will enjoy reading her blog on the subject.

Take care!

SE wink

Chutz
Forum Moderator


Date Joined Jan 2005
Total Posts : 9258
   Posted 3/25/2011 1:27 AM (GMT -6)   
Hi Jennie~

Go to the online site and find a contact number. Tell them exactly what you need...the name of a doctor who can help with your problems. Whoever answers will be someone who can direct your call to the proper department. I think you'll be happy you did.

Chutz
Moderator on the Fibromyalgia and Chronic Pain forums
~*~*~*~*~*~*~
Daily Donnybrook: Fibromyalgia, Insulin Dependent Diabetes. Ulcerative Colitis, Rare form of Dermatitis, Collapsed Disk, Osteoarthritis (especially in right hand and neck) and a couple of other adjunct agitations.
~~~~~
Against the assault of laughter nothing can stand.
Mark Twain

jennie48
Regular Member


Date Joined Sep 2008
Total Posts : 293
   Posted 3/25/2011 7:36 PM (GMT -6)   
chutz... I called this afternoon and I have to have my MD give them a referal then I will call back and talk to someone and get an appointment. Today was a bad day for me. I posted on the lyme site about my day.. lets just sayd that I think the PT flared the Lyme up ;( thanky you again...

screaming Eagle.. thank you ...and I will read her blog as well :)
lyme disease, chronic pain, kneck spasms, anxiety, and ADHD

FIGHTING TO BE ME AGAIN!!!

jennie48
Regular Member


Date Joined Sep 2008
Total Posts : 293
   Posted 3/25/2011 7:42 PM (GMT -6)   
screaming Eagle I couldnt find nasslady on the Lyme forum to be able to get to ger blog.. can you link it to me thanks
lyme disease, chronic pain, kneck spasms, anxiety, and ADHD

FIGHTING TO BE ME AGAIN!!!
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