View Full Version : at the end of my rope

02-14-2008, 09:04 AM
Hi to everyone,

This is my first post and I fear it might be a long one. I have been having episodes with terrible joint pain, but my joints never swell or are red for at least the last 8 years. (My last one started in Oct 2007 and I think I am coming out of it. Hopefully!) Each event I went to my doctor and was told that it must be a virus. The pain is worse 2-3 days before and the first day of my period. Sometimes it is so bad that I can hardly walk or hold a pen. 2 years ago, my left shoulder froze for reasons unknown to the docs. I had manipulation on that shoulder to tear out scar tissue: during physical therapy, I started having pain and tingling in my arm and hand. After going to 2 different Ortho surgs, a shrink and a nurologist, I was told that it is probably Thoracic Outlet Syndrone and was sent to a pain management doc. I did several nerve blocks and was finally implanted with a Spinal Cord stimulator to help block the pain. Last year my right shoulder froze. Again, I had to go thru a manipulation and was told that I had TOS on that side too. I got a sinus infection in Oct (one of a thousand...get them all the time) With in 24 hours of starting my antibiotic, I woke up with severe joint pain that until Jan 25 has remained constant and severe. After a week of pain, I went to my regular doc and was told that it was viral. After another week, I changed docs and was told that he thought that something else was going on and was send to a rumey. I had to wait until Jan 29th to see her. Long story short , lost of test and blood later, I was told that most of my labs were okay except my SED...which was high. She told me that she thought it could be Lupus, but my labs didn't back that and that I also had Fibro. She didn't want to give me a diagonisis of Fibro because no one would continue to look for the real cause. So here I sit with pain in my joints, constant low grade fever, painful muscles, exhausted, an under the skin, (looks like a rash that will get red and fade, but never goes away) red blotch that extends from one side of my face, across my nose to the other side and constant headaches and other stuff. I have had other problems such as miscarriage and bleeding and heavy clotting during my 2 pregs that made it to the end. I also had a mass the size of a tennis ball that grew from my windpipe and my lung. (Doc's still don't know what that was.....at last check, it was being studied at the University of Kentucky). The list of stuff goes on and on. I am so tired of being sick and no one can figure out what is wrong with me and always being the 1 in a million person that has adverse reactions to meds and docs not taking me serious until I so sick that I end up in the hospital. Has anyone else had anything like this??

I am so sorry to unload all of this, but I am honestly at the end of my rope and so very tired of docs making guesses at my ailments. Thank you for listening1

02-14-2008, 09:59 AM
You do not need to apologize for needing to vent. That's what we are here for. Unfortunately, too many of us have gone through what you are going through with doctors misdiagnosing us and telling us that it is all in our heads or scratching their heads and looking at us with complete bewilderment! For those of us suffering with Lupus (or any other autoimmune disease), this is quite commonplace.

Your symptoms do sound as if you could be suffering from Lupus and Fibromyalgia (personally, I have Lupus, Fibromyalgia, Raynaud's Syndrome, as well as several other co-existing diseases). It is also quite common for many of us to suffer with 2-3 different diseases at the same time.

It is also possible to have Lupus with negative blood results (5% of lupus patients fall into this category). In any case, you are not alone and you will find that someone here understands your symptoms and/or has dealt with them personally. You can come here at any time and we will always be willing to help you in any way that we can. You are not alone!

Peace and Blessings

02-14-2008, 10:26 AM
Thank you for your understanding. I'm glad to talk to someone else that has gone thru some of the same things. I am usually an upbeat type person, but this endless parade of aches and pains, doctors and everyone saying they don't know what is going on is starting to wear on me. At this point, I just want a "name" for what is happening to me. This unknown problem has cost me a great job (I am an accountant), cut my social life in half and keeps me at home instead of being out with my kids or my husband. I am afraid it that it could cost me more the longer it goes on with no end. Naturally, no one I know has any way to relate to me and sometimes they act like I am faking it. (I look well.....I fee bad) I can see the disbelief and disappointment in their face when I am unable to do something with them at the drop of a hat. Basically, I am tired of all of this and long for my old life and feel like I am stuck in limbo as long as the doc's keep saying "I don't know"

Again, thanks for listening.

02-14-2008, 12:51 PM
Hello -

Just wanted to offer some support and to tell you "NEVER GIVE UP!!!" As Saysusie advised, many here have been through years of frustrating tests, multiple physicians, referrals here and there, and people (including ourselves) thinking we must be losing our minds before we get a diagnosis. Some of us are still waiting. So, we can definitely understand where you are coming from.

The light at the end of the tunnel is out there. So hang on to your rope, hang in there, and most importantly, hang around here. You will find understanding and support that will help you get through this.

My best wishes are with you.


02-14-2008, 01:07 PM
I have a friend who had the forzen shoulder - she doesn't have any autoimmune conditons. She was told that it can recur, once you've had it you can be prone to it. She does range of motion exercises daily to help prevent that. So far....it is working!

Welcome to the community here, obxbum, you'll find we do vent here regularly, and laugh, and cry, and always always offer each otehr support.

02-14-2008, 03:49 PM
Both Orthos have no idea as to why they both especially in someone that was active. I was painting the inside of my house when the first one froze. With mine, it didn't take long to go from having full range of motion to unable to lift my arm above my head. The second froze after I got hives for unknown reasons. It too came on quick. (both cases, within 4 to 6 weeks. According to my regular doc, I don't do anything half way and I not like anything he has seen. In other words, I make him work.) Both Orthos have tested me for diabetes....both time it was negative. Before my last manipulation, I made the Ortho promise me that this would be the last time we would do this.....if I had to come back, it would be on his dime! Both Orthos said it be extreamly rare for mine to return for no apparent reason....it might return due to trama or injury. I have most of my range of motion back and have to do exersises to try to get the rest. My Internist thinks that all of the things that are going are connected somehow....just doesn't know how.
I wouldn't wish a frozen shoulder on anyone. I hope your friend is doing well and has not had the kind of pain I have experienced.