They have tested me for arthritis of all forms all negative. This is not in my head I relocated my shoulder by myself the other night when I woke up... I keep losing weight, sleep, an the desire to even go on. I NEED HELP!
I am terrified. No longer have insurance, harder to get up and go to work and have a child on the way anyway... I am really scared...
I am 25, a former highschool and college athlete, and I am having similar issues with upper back after a serious of accidents (sports injury, car crash, bad work environment). These have left me fairly disabled over the past year and a half. Heres some symptoms: Left side was so tight I ended up with my left trapezius elevated up near my ear. Experienced neuralgia in my left fingers. Rotator cuff problems. Scoliosis (which I did not have prior). I am presently off work because I have difficulty using a computer with a desk (sitting upright is painful). I was diagnosed with myofascial pain syndrome about 6 months ago, which is kind of a worthless term to me since I do not want a syndrome I want a cure. I have been treated with dry needling and trigger point injections and it has helped immensely. My shoulders are now symmetrical and I no longer experience the neuralgia. My scoliosis is mostly gone.
I am still having some issues and its hard to distinguish between depression from my injury or from the flexeril.
My suggestions are to look into myofascial pain and trigger point therapy. Muscle dysfunction can cause an enormous quantity of symptoms, some not immediately obvious to physicians.
Here is a good book and its fairly inexpensive. http://www.amazon.com/Trigger-Point-Therapy-Workbook-Self-Treatment/dp/1572243759
hope this helps you.
May I suggest that you take a look at your medications? My 93 year old mother-in-law (an ex army nurse and nursing home administrator) is very skeptical of doctors. She was not keeping anything in her system for a year or more and almost died. On her own, she got off some of her medications and healed 100%. I recently got off of pain meds and began having extreme pain in my shoulder blades and neck. Because of my MinLaw, I looked at what medications I was still on. Protonix, a proton pump inhibitor, causes muscle pain and bone weakness in a few patients. So I decided to switch to another acid reducer. I started getting better the next day. I have no idea if you are on other medications or not, but I thought I would throw this out there since it is on my mind. Good luck to you.
I have a genetic disorder called Ehlers Danlos Syndrome. It is characterized by loose joints that easily dislocate, muscle weakness and pain, joint pain, low blood pressure, neurology issues and many more. These issues stem from our DNA not making collagen correctly, thus making every tissue in our body weak. It sounds like you have many of these issues. Most doctors don't know about it and so people go for years not getting correctly diagnosed because it doesn't show on xrays or MRIs. A Rheumatologist or geneticist can check your joints and determine if you have it. There is no lab test to diagnose it.
You can go to ednf.org and get alot of information about it. It is genetic, is anyone in your family loose jointed as well? My physical therapist tells me I can never sneak up on anyone because my joints pop all the time.
There are different kinds of EDS, most people have the hypermobility and classical type (stretchy skin). There is a vascular type that is dangerous because it affects the aorta which can easily dissect. There is a test for the vascular type. There is no cure, doctors treat the symptoms with pain medication. It helps to exercise in a pool, brace the weak joints, and do moderate exercise. We are counseled to stay away from chiropractors as they may damage our loose joints.
I would suggest you look at ednf.org (the national foundation) and google Ehlers Danlos Syndrome and see if the symptoms sound familiar to you. Dr. Clare Francommano at NIH and Dr. Howard Levy at Johns Hopkins have written several articles about it. Dr. Rodney Grahme from the UK is the EDS guru and has written books about it. He speaks at our conference every year. I hope this is helpful.
Thank you, going to have to research. Much Appreciated.
Thank you.. This sounds very interesting, even more so since the chiropractor just recent ruined my life even more.... not that it is directly his fault... in my eyes anyway.. an my skin is stretchy everything is stretchy... and I'm 26..
I refused to take medications these days... 10 years of being a test subject without direction left me trusting no one after going through more pain and withdraws from many medications....
However Meds have caused me a lot of extra unneeded side effects and pain over the years.... An prob made whatever this condition is a lot worse. An thank you for your time and info. I hope all of us get the help we need.
I keep thinking about this.. Been in 3 car accidents and 2 good sport accidents. An it feels like there is a bend in my back, but they say my x-rays are fine, which is stupid because my shoulders don't feel fine nor my back and all this stuff did start occurring after a rota-tor cuff surgery....
Hello and Welcome,
I am so sorry to hear about all your pain and problems and at such a young age. My heart goes out to you!! I don't have any "guesses" as to what may be your diagnosis. We do have an "Undiagnosed Symptoms" Forum than I suggest you post on also. Don't get me wrong you are always welcome here but you may find additional suggestions on the Undiagnosed Symptoms Forum. If you need help locating it please let me know.
I want to encourage you to keep searching. Don't give up. I do know how frustrating it can be... but someone somewhere will have an answer for you! It took me years to find the right answerts.
If you haven't consulted a physician or clinic associated with a large teaching facility I suggest you to do so. They seem to more often think outside the box and are on the cutting edge of medicine. If you have been there with no results, still don't give up.
I'll look forward to your updates.
Best of Luck to You,
I can sympathize with your pain, sadness, and frustration, as I am a 32yo mother of 2 young children, trying the complete nursing school, and suffer from trigeminal neuralgia(which began after an intense jaw surgery),TMJ, fibromyalgia and interstitial cystitis(both which were exacerbated after my my second c-section). All which has left me frustrated that nobody believed or understood my pain(because it wasn't visible), and in severe pain that my intense drug therapy doesn't help with, a horrible/non-existent memory, and pain related depression.
Have you been evaluated for Fibromyalgia? I am asking for a few reasons, as your memory and thinking problems sound very similar to what I've experienced since the onset of my fibromyalgia; we FB sufferers call it "fibro-fog" and it is a lot like Alzheimers(forgetting things, not able to think clearly). Also, the areas where you are complaining of having severe pain in(back, shoulders, knees/legs) are just some of the areas that fibromyalgia manifests itself. Similar to you, in the beginning,before my diagniosis, I was sent to physical therapy, and since that 1 time, my fibro pain has been 10X++ worse than it was to begin with. Unfortunately, there is no test to diagnose fibromyalgia;its just a diagnosis given when all other possibilities have been eliminated. There are about 14 "trigger points" on the body that a Rheumatologist touches/moves to test for your pain reaction, and if you have pain and sensitivity in at least 8 of the areas, they can safely diagnose you with having it.
I understand that, like me, you don't like having to take pain meds(I've had to take them, in order to regain at least some quality of life, after trying EVERYTHING else possible), but there is a newer drug, Savella, which is not a pain med, but has an off label use for the treatment of fibromyalgia pain and depression. Unfortunately, it didn't help me, but it does have a high success rate amongst other sufferers.
Severe pain causes depression. Also, fibromyalgia is often a precurser to Arthritis, and many of the symptoms are similar.
I used to be the "sharpest", happiest person I knew; impecable memory and it was always very easy for me to remember things, in great detail and to enjoy life without a care in the world. I've had chronic pain for almost 7 years now, beginning with trigeminal neuralgia and severe TMJ, and most recently, fibromyalgia and interstitial cystitis. Since the start of this painful journey, the pain (and not being able to achieve adequate pain relief from my medications) has taken a tole on my emotions, causing me to be depressed and with anxiety(which I take anti-depressants& anti-anxiety meds for),and most recently, with my memory and thought processes(related to/caused by my fibromyalgia)-that in itself adds even more to my depression and anxiety.
Everyone who I know who suffers from Fibromyalgia complains of the same problems with "fibro-fog" and all of us either suffer from or are in the early stages of Arthritis(which exacerbates the fibro pain and limitations in movement). As a nursing student and a chronic pain sufferer, I've learned and know that many chronic pain conditions cause and/or are related to others; such as fibromyalgia and arthritis, and memory deficit problems and depression going hand in hand with chronic pain, in general(because, when you are in so much pain, especially when it interferes with your life, it causes emotional/psychiatric problems(depression, anxiety), and problems with your memory and thought processes.
I hope that this helps you, and I wish you luck and pray that you are able to find peace in and regain your life, despite the feeling of helplessness and chronic pain. There IS a light at the end of the road:)
Dude, I have been there, it started with shoulder and trap pain and I had to give up bench press and wrenching on my car, but I still ran and did some lower body weights. After it didn't clear up for about 3 months I saw a doc and he said rotator cuff problem. I saw an ortho from his referral and the ortho did mri of my shoulder and said there was inflammation but not worth operating on. He injected cortisone in the joint and nothing really improved. A few weeks later I saw him again and he did another mri and a nerve study and nothing. By then my whole left upper back was messed up and I was having the neuralgia in my fingers and my trap was spasmed up so my left shoulder sat an inch higher than my right. I got in a car accident that month and it got really bad. He thought it was all in my head for some reason and bs'd me by telling me to try accupuncture which was worthless. It took a few more docs before I got the diagnosis of myofascial pain and trigger point specific therapy. I went from deadlifting around 400 lbs to barely able to carry a grocery bag. My joints pop all the time because my muscles were so tight from the trigger points / muscle knots that the joints were out of alignment. I was taking flexeril for awhile to help the spasms.
Right now my shoulder assymetry is gone and my back isn't spasmed all the time but I am so weak from inactivity for a year, like I had to start lifting 5 lb dumbbells that my mom uses for shrugs, down from like 100's 2 years ago. I haven't worked in 6 months because I couldnt sit at a desk due to the neck pain.
Wow! I've gone on a search engine to find someone who has Trigeminal Neuralgia with Fibro and Interstitail cystitus - and found you!!
I am having a cystoscophy under anasthetic on Friday to hope for diagnoisis of I.C however the urologist doesn't think I have classic symtoms.
I feel for you - I find if one aspect improves the other pain flares! Do you live in the UK. I'm worried about these "invistible" yet painful problems when it comes to applying for benefits since I am no longer able to work.
You sound just like me - I used to be super active and focussed - these days I struggle with the 24 hour clock and giving and receiving change!
Have you ever looked into MS? I wonder because many of my symptoms are seen with MS too although I show no other neurological signs at the moment.
Would love to communicate with you directly but not sure how to facilitate?
Not sure if you are on here anymore or not but I came across your post while searching on another topic. I can't say much about other medical conditions but all the symptoms you mention are symptoms of toxic mold. It is common and if you have it in your home you will feel like you are crazy because you can't see it most of the time. Most health professionals are not educated on the subject and are of little help. You can read plenty about it on the internet. If you haven't solved your problem I recommend having a certified mold inspector come test your home and especially your sleeping area. Call around and you will find a good price. Remediators are extremely expensive to pay for out of pocket and don't have the analysis skills an inspector will have. I recently did what I recommend and solved the same problems for me and my family.