Discussions By Condition: I cannot get a diagnosis.

Please If anyone can help me.

Posted In: I cannot get a diagnosis. 12 Replies
  • Posted By: mugzy322
  • December 12, 2006
  • 09:00 PM

I have been living with severe upper back pain for close to 9 years now. It was'nt always severe though, it has gotten progressively worse over the past 2 years. I am only 29 and I feel like I'm 60. I can't do anything for an extended amount of time before I am completely uncomfortable. I have had xrays, an mri, physical therapy, tens unit, heat applications, cold applications, orthopaedic surgeon, accupuncture, a physiatrist saw me, a chiropractor, massage therapy, ultrasound therapy, muscle relaxers, 800mg of ibuprofen, you name it. If I walk I feel like I'm turning to stone. I am extemely tight and tense 24hrs a day. I was told by the massage therapist that I was the only patient that she worked on that she could not get the muscles or "trigger points" to release! I was also told I was very hypertonic and thought it could be fibro myalgia. I also have "tender to the touch" legs. It hurts to inhale and sometimes while I'm inhaling I can feel things moving around back there. It hurts all the time. I am going to yet again another doctor in Feb. This time a rheumatologist because I'm at my witts end! I'm to the point where I don't care what the diagnosis is I just want relief. Does anybody know what this could be? I am desperate for an answer!!:confused:

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  • Hi Mugzy 322Before I write too much about your post I need to know if you are hyper mobile (double-jointed/very bendy flexy) in any of your joints? You sound like you are stiffening up but bendy also means if you were bendy but aren’t now.Agape,searchingsam
    searchingsam 54 Replies
    • December 14, 2006
    • 00:55 PM
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  • Oh Thanks for responding! I used to be alot more bendy before this pain took over. The pain is very deep and is spreading pretty quickly now. I even lean on magic markers against a wall or hard chair to dig it into the pain??!! It is under and next to my shoulder blades. 9 years ago it started only in my right shoulder blade now it is in both and traveling.:confused:
    mugzy322 7 Replies
    • December 14, 2006
    • 01:31 PM
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  • I would definitely recommend see a chiropractor and getting an adjustment. My mom started me when I was 6 years old - 23 years ago. I have worked for many chiropractors over the years and have seen numerous people drastically helped by it. Good luck!Jenn
    Anonymous 42789 Replies
    • December 14, 2006
    • 10:16 PM
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  • Hi Mugzy, PART ONEI am going to conclude in your saying you aren’t as bendy as you used to be that you are hyper mobile in some way.Do you also show signs of a hump forming at the base of your neck? I had a straight spine and then about age 16 I noticed this ghastly hump; referred to as a buffalo hump.If you are having the problems for the reasons I suspect, then x-rays and MRI are going to be negative, though on my x-ray there is sign of one vertebrae being too close to the others where you describe pain, but this is rectifiable if you have my same problems, so there is much hope for you.I have had a bad back since age 12. I have suffered the pain in the same area as your self about age 27 (I am now 37) and its worsening course seems to be pretty identical to yours.I have Ehlers-Danlos Syndrome Type III. You may like to visit the site www.ehlers-danlos.organd www.hypermobility.org I had success with a chiropractor for several years (as a 12 yr old onward), but all of a sudden my back took a turn for the worse and muscle spasms had me use a wheelchair on and off and a chiropractic session became useless. I wasn’t diagnosed with hyper mobility until about three years ago, though I knew from age five I was different to everyone else with my bendy joints. When pain set in I felt my hyper joints were in some way connected to my present problems, though no pain when younger I couldn’t run without spraining my ankles. Doctors fobbed me off. Two years ago I stumbled upon pilates with one on one tuition as my last hope and it sure was a success. I was shown how to sit, stand and walk properly and turn on my stabilizing muscles, and in no time didn’t need to use a wheelchair, but I still couldn’t go for long walks or participate in any type of physical activity. But I didn’t realize my situation was more complicated or that there was more I could do at the time. I am also rid of most of my buffalo hump.Are you experiencing decrease in muscle strength? And possible signs of muscle shrinkage? I did and thus the beginning of my muscle spasm and pain in the back under and around the shoulder blades.Recently I had it confirmed that I have insulin resistance syndrome (IRS) also known as syndrome X and formally Metabolic Syndrome. IRS inhibits the production of Growth hormone (GH), and insulin like growth factor -1 (IGF-1) once this happens many detrimental things will happen and has been linked to most major health problems today. IRS is on the rise. Also good news is that IRS is reversible.To test for IRS a simple glucose tolerance test GTT can be ordered by your GP, but make sure insulin readings are also sent to the lab for essay. If glucose is normal this is NO indication that your insulin will be normal also. I have normal glucose but always abnormal insulin. I was also told that insulin resistance is nothing to be concerned about; it IS a huge concern, and most doctors are totally unaware of this. Study your own test results, I failed to do so and paid the price many years later. I was told over the phone my readings were normal – they weren’t.Unfortunately to test for GH and IGF-1 this has to be done through an endocrinologist and will require a insulin tolerance test ITT. GH can not be accurately measured with a one off blood test as growth hormone fluctuates greatly throughout the day.I read your other post about lost sex drive. IRS will cause this also. Low growth hormone affects sex drive.I also have tender to touch legs. I have had this since I was a child. Lean on my leg and I go through the roof. It is all part of the connective tissue disorder.Continued…..Searchingsam.
    searchingsam 54 Replies
    • December 15, 2006
    • 10:32 AM
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  • Hi Mugzy PART TWOMy Pilates instructor also does myofascial and rolfing on me. Releasing trigger points. To release the muscle you have to participate. When the point is located the practitioner presses these areas and the patient very slowly and slightly moves the muscle.I do my own releasing at home on a daily basis as I need daily release. For this I get a tennis ball and lay on it where the knots are and slowly and slightly contract and detract the muscle and move my arm around where I feel it is necessary. Sometimes really tensing and holding for a few seconds and then releasing. You will learn what works for you over time. I have had huge knots just collapse and the feeling is fantastic. Once it would take three days to recover from a frozen shoulder blade, now with the tennis ball I can be back in action and free of pain within half an hour.To stretch your back lay on the floor and place stretch out you arms above your head. Close your eyes and focus on the area of the pain and breathing in and out through your nose at a normal breathing pace, focus your breathing on that area with visualization of softening and unwinding and lengthening. Once you have loosened up, have a pre-rolled towel like a flat sausage at the ready. Lay you spine parallel on this to give it a stretch with your legs bent as you don’t want to stress you lower back. As time goes on over the weeks you will be able to have a cylinder towel sausage and lay on that. You can also lay on the sausage horizontal to your spine, and move it vertebra by vertebra up your spine to re-align it and you should get some pretty good cracks, breathing all the way out. A visit to an osteopath who practices myofascial is also invaluable, make sure if you go to a Pilates or osteopath they are familiar with sports injuries; though our problems aren’t sport injuries we need to be treated with care. You don’t want to land in the hands of someone overly zealous who can’t sympathize and expects you to end up doing cart wheels. Find any one like that and you will need to find another practitioner of Pilates or osteopathy. No yoga positions (if you do yoga or want to try it) that compress the spine. I don’t do yoga, it caused me harm because of being hyper in the spine. Jumping up and down even low impact with disturb you spine. Until it is strengthened avoid such activities.Recently my research led me to trying oral powder L-Arginine (L-A) that is an Amino Acid that stimulates GH and IGF-1. I am no longer suffering muscle wasting or spasms and now show signs of growth. I don’t feel I am falling apart, but coming together like I was being infused with glue. The sensitivity in my legs is quickly vanishing and if my dog jumps on my lap now I no longer go through the ceiling. Growth hormone repairs tissue cells and is vital in all body cell growth.I take one level teaspoon of L-A three times a day (recommended dose for the average person on the street) on an empty stomach (I will be increasing the dose as I am badly wasted and thus not the average). I eat about half an hour later. It must be taken on an empty stomach or it won’t be affectively assimilated into the blood system through the small intestine. It is expensive but worth every cent. If you decide to try this stuff and it works, you might be able to strike up a discount deal with the health shop if they know it is for a medical condition. I started to feel growth muscle pain after about ten days on the stuff after I had been lifting boxes the previous day.I am hoping to have an ITT in January, so I will not take L-A a few days before the test or it will interfere with the results.Look into Syndrome X and you will also come across dietary help to reverse this condition if it is what you also have. Carbohydrates are a BIG no-no. Not all sufferers of hyper mobility are IRS. www.womentowomen.com All the best, sorry for long post but couldn’t be helped. Any questions or need clarification please don’t hesitate to ask.Agape,Searchingsam
    searchingsam 54 Replies
    • December 15, 2006
    • 10:33 AM
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  • Thanks for all the info!! The only thing is I do not have knots in my back the muscles are literally contracted and tight. I do lay on tennis or some sort of hard roud object but it does'nt release anything it just makes my mind I guess fell that something is trying to be done. I swear I am in pain all day and all night I never get a break. I visited a chiropractor twice a week for 2 months she adjusted me every time but it's not the adjusting that is a problem it is my muscles and she said she does'nt know what it could be. She was the one who recommended a rheumatologist from the beginning. My father has severe rheumatoid arthritis it is even now in his lungs he was diagnosed at the age of 37 and is now 52. I fear that it is the start of rheumatoid. The only thing is it is my back that suffers the most so I'm not sure what it could be. I use ice packs, it hurts to inhale especially after a walk I feel like stone and I'm completely wiped out. I am visiting the doctor in Feb it is also the same doctor who treated my father since day one so he will at least know my history and hopefully diagnos me once and for all. Remember this started when I was 21 and has gotten worse every year since I am 29 now. My calves are tender to the touch and I can bruise very easily when touched even a little hard. Well, I guess I will take it day by day until the doctor lets me know. Thanks for the input and when I get a diagnosis I will post it with so much relief!
    mugzy322 7 Replies
    • December 15, 2006
    • 02:03 PM
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  • Oh I'm sorry I just now saw the first post about your diagnosis. Wow, I never heard of that before. I live in Florida what exactly is the doctor called again? I would love to make an appointment!
    mugzy322 7 Replies
    • December 15, 2006
    • 02:11 PM
    • 0
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  • I would definitely recommend see a chiropractor and getting an adjustment. My mom started me when I was 6 years old - 23 years ago. I have worked for many chiropractors over the years and have seen numerous people drastically helped by it. Good luck!Jenn Thank you Jenn for reading and responding unfortunately a chiropractor did not help and she recommended me to see a rheumatologist so that is what I'm doing in Feb.
    mugzy322 7 Replies
    • December 15, 2006
    • 03:18 PM
    • 0
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  • All the best Mugzy,My grandfather on my fathers side had rheumatoid arthritis. I have so far been cleared of that, but he developed this around about his sixties. He was mildly hyper mobile compared to myself and didn’t sufferer much till the arthritis and inherited stuff from him. It is great that you will be seeing the same doctor as your father as this will indeed help heaps with the past history.If I find anything helpful regarding rheumatoid arthritis I will post. I need to know a bit more about it as my Mum said she is developing signs; and of course I wish to avoid it and I know there is something out there. Some people swear by apple cider vinegar. (Any one out there tried the Apple cider? I am interested in feed back)No, chiropractors can’t assist us much, as it is a muscular problem and once we are manipulated the muscles just pull everything out of line again. My chiro ended up referring me to a sports medicine bloke who was brilliant.How much, if any, Chinese medicine have you tired. I know you went for acupuncture, but again something needs to be flowing through the blood system like those herbs. Have a google with Chinese herbs/medicine and arthritis for something really specific.All the best.Agape,Searchingsam.
    searchingsam 54 Replies
    • December 15, 2006
    • 10:03 PM
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  • Thank you.
    mugzy322 7 Replies
    • December 19, 2006
    • 01:04 PM
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  • I have been living with severe upper back pain for close to 9 years now. It was'nt always severe though, it has gotten progressively worse over the past 2 years. I am only 29 and I feel like I'm 60. I can't do anything for an extended amount of time before I am completely uncomfortable. I have had xrays, an mri, physical therapy, tens unit, heat applications, cold applications, orthopaedic surgeon, accupuncture, a physiatrist saw me, a chiropractor, massage therapy, ultrasound therapy, muscle relaxers, 800mg of ibuprofen, you name it. If I walk I feel like I'm turning to stone. I am extemely tight and tense 24hrs a day. I was told by the massage therapist that I was the only patient that she worked on that she could not get the muscles or "trigger points" to release! I was also told I was very hypertonic and thought it could be fibro myalgia. I also have "tender to the touch" legs. It hurts to inhale and sometimes while I'm inhaling I can feel things moving around back there. It hurts all the time. I am going to yet again another doctor in Feb. This time a rheumatologist because I'm at my witts end! I'm to the point where I don't care what the diagnosis is I just want relief. Does anybody know what this could be? I am desperate for an answer!!:confused:My neibour was in pain that sounds similar to yours. It was months before she was diagnosed with polymyalgia, (not sure of spelling) it's a type of arthritis of the nerves.. Ask the doctor to test you for it.. Good Luck!
    Anonymous 42789 Replies
    • January 18, 2007
    • 07:53 PM
    • 0
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  • Hello serchingsam!thanks for all the info, i have just joined the HMS website, waiting for my email so i can post! i had no idea it was so wide-spread i am extremely hypermobile, ankles knees hips shoulders wrist hands.. and i think my spine aswell, i have very bad spine pain and have been diagnosed with scheuermanns disease of the spine, my hips and knees dislocate aswell .. i can do 7/9 of the test for hypermobility, plus i can bend my arms (out straight) right across my neck so my neck touches my arms! might see you over therethanks very much!
    Anonymous 42789 Replies Flag this Response
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