New here..24 years and need help!

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New Member

Date Joined Apr 2012
Total Posts : 3
   Posted 4/9/2012 4:48 PM (GMT -6)   
Hey all!
I've been dealing with a handful of medical problems for almost 2 years now. I have been diagnosed with Interstitial cystitis (bladder disease), Arthritis (questionable) as well as a mild case of fibromyalgia.
I am desperate for answers and I'm just not getting them. I feel like I've been to every specialist and had every test done and don't have the answers I am looking for.
The main issue I'm having right now is shoulder pain in both shoulders. I'm currently in a 3 week flare that has me up 5 times a night literally screaming as it feels like my arms are being pulled out of my shoulder joints. The pain is much more painful at night or at rest. 2 docs I've seen say arthritis and 3 docs say it's not arthritis and they're unsure of what it is. I am waiting to see a orthopedic surgeon and hoping for answers. My rheumatologist says it's arthritis and fibro by my family doc doesn't agree and neither do the pain clinic docs. I am always exhausted but can't seem to sleep due to pain.
Regardless, It is literally ruining my life. I have 2 young sons and a husband. I am a professional photographer and I can barely work at the moment. I feel like I am getting completely mixed diagnosis' and don't know where to go from here. I was in a car accident May 2010 and I believe that most of my symptoms began after that. I don't remember any previous shoulder injuries although I have been hard on them in the past with sports etc...
I really hope some of you can give me some insight on where to go from here! I don't know where to turn and I'm not coping with this pain any longer....heat, ice , baths , rubs, topicals and painkillers aren't helping. What do I do from here?
Thank you so much for taking the time to read this :)

Veteran Member

Date Joined Mar 2011
Total Posts : 816
   Posted 4/9/2012 4:58 PM (GMT -6)   
Hello and welcome to the HW forum.  I am not a doctor of any kind, I think your best hope is your ortho dr.  It seems that is a good place to start.  What type of pain meds have tryed, please dont feel you have answer, as it is a personal matter, I am just wondering what you have tried and if you have had any relief at all from any of them.
Good luck to you, hopefully your ortho can help you, have you had mri's, xrays', any testing done?
Let us know how it goes and take care,
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

Forum Moderator

Date Joined Feb 2003
Total Posts : 16788
   Posted 4/9/2012 11:20 PM (GMT 0)   
Hi MissLyss and welcome to the chronic pain forum. I read the frustration in your post and wish there was something I could say to make you feel better. It is very difficult indeed when you have drs that are not in total agreement, its like you really don't know which one you should believe.

My first thought would be to fire the whole lot and start all over with a set of fresh eyes. I am leaning towards what your rheumatologist is saying about the Fibro. Fibro is one of those diseases that a person can have a mild case to a severe case. No two cases are alike, it is an individual disease and the patient should be treated accordingly. Pretty much a rheumatologist is the best dr to see for Fibro because even today there are still many, many drs that do not believe Fibro exists and the rheummies are the ones that take care of people with it. A lot of the symptoms you described really do sound like Fibro. We have a Fibro forum here at Healing Well and you may want to pop over there and check things out with them. They have a great group of people over there that are very friendly and helpful.

Another thought would be to perhaps get an appt and be seen at one of the teaching hospitals. If you will look in CP101 above here, you will find a listing of all the teaching hospitals. Maybe one is located close to your home.

Please keep us posted on how you are doing. Take care...Susie
Moderator, Chronic Pain Forum & Psoriasis Forum

Veteran Member

Date Joined Oct 2008
Total Posts : 2024
   Posted 4/10/2012 8:36 AM (GMT -6)   
Good morning
Just wanted to pop in and welcome you aboard. Glad you found us but sorry you are having so much pain. I hope you will continue posting and let us know how you are doing. You will enjoy the members here, very caring, compassionate and non judgemental. You will feel the connection right off the get go.

Have a good day,

Veteran Member

Date Joined Aug 2006
Total Posts : 9664
   Posted 4/10/2012 9:38 AM (GMT -6)   
If you've not had any mri's done yet, then maybe ask your neurosurgeon about mri's of your cervical spine,
and see what those results would be and if nothing shows up then maybe consider what Straydog said above...
maybe start over with all new doctors...also visit the Fibro Forum here...and does a moist heating pad help???
most of here get some help with a good moist heating pad, look for an auto shut off...
maybe look into physical therapy as they can use ultra sound therapy to help to loosen up the fibro
knots on your shoulders, it can help...and maybe see about melatonin for help sleeping at night it's in
the vitamin isles in your markets...
and don't let the neurosurgeon tell you that surgery could help without seeking at least a second and third opinions...
Caution is warrented when surgery is what they reply with....
Many many well wishes...
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...

Veteran Member

Date Joined Oct 2010
Total Posts : 932
   Posted 4/10/2012 11:04 AM (GMT -6)   
Hi MissLyss,

Others have given you some great advice. Let me supplement Chartreux's suggestions with specific vitamins and minerals. Have a look at They produce a ridiculously expensive vitamin B cocktail that you can assemble on your own more cheaply. My wife takes a medication that causes nerve pain without this supplement and I know it is also used for diabetic neuropathy and other conditions. It might also help fibro.

In addition, I've read that magnesium can also help. So, if you're not already taking a multi-vitamin, extra B and magnesium, give it a shot.

Aside from that, the suggestions that you have more x-rays and MRI's are good pieces of advice. My first CP issue, caused by a car accident didn't get properly diagnosed for about 2 years because I never had an MRI with contrast. That finally showed the cartilage in my hip and how badly it was mangled.

Given that your pain is on both sides, a common source seems more likely, but it could also have to do with each joint.
C4-T4 Scoliosis (disk degeneration, stenosis, narrowed neuroforamen, bone spurs), RT hip and SI joint damage from car accident. Also, pectus excavatum, supraventricular tacycardia and mitral valve prolapse syndrome.
Current meds: Ultram ER 300mg & 2-3x 10mg Hydrocodone daily. Oxycodone 10mg for BT. .25-.5mg xanax as needed for sleep, Verapamil 240mg SR (for tachycardia). [/gray
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