Deteriorating tendons causing excrutiating pain throughout the entire body…Help needed. Research funding, knowledge, awareness, support groups?

For the past three years I watched my girlfriend change in front of my eyes. She is now 47 years old. She is a beautiful, intelligent, smart, sweet and all around fun person. What is happening to her is tragic and painful for me to watch. I am at my wits end and begging for help from anyone who knows anything about tendonitis, tendonosis, deteriorating tendons, and auto immune diseases.

Marci is my girlfriend. She is quick to give a smile. She has her little annoying quirks like most people but she is the best thing that ever happened to me. When we met over for years ago marci was what some people would describe as a hard body. The kind of girl that would make the guys drool when they saw her in a bikini. 

trk28                      trk25                           trk27

Don’t take this the wrong way. My girl friend is still beautiful. But the change in her has been dramatic, frightening even. Her muscles that used to be hard and strong are now soft and weak. If you barely touch her she bruises like a banana. It’s heartbreaking. She used to be a dancer and was even into martial arts and athletic. But now things are much different. For example when we go to the grocery store she has to use an electric wheel chair because just walking around the store is too much for her. When she does walk it’s agonizingly slow. Pain is clearly written on her face with each step. We used to go out all the time but now it’s very rare and when we do go somewhere it involves me pushing her in a wheel chair. Honestly I don’t mind taking care of her but as you can imagine she is self conscious and even embarrassed. 

I wish I could tell you that Marci’s deteriorating tendons were all we had to deal with. As you know in life it’s never that easy. We live with and take care of her Dad who is 74 and almost completely blind. He has had a stroke and has congestive heart failure. Just taking care of him would be a burden on a healthy girl. But Marci isn’t healthy. She constantly in pain. I’ll tell you more about her pain in a minute. Like I was saying she takes care of her Dad. She also take care of her Mom who is also in her seventies. Don’t even get me started on this woman. The long and short of it is Marci’s Mom is constantly in and out of the hospital with a plethora of health problems. My girlfriend is a family girl and loves her Mom and Dad. So when they need groceries, medication, or anything people need Marci and I go fetch it because that’s the right thing to do. To be clear I want you to know I’m not complaining. I’m just telling you what we’re up against here. Obviously Marci’s parents don’t drive, and 99% of the time she doesn’t either. Guess who does the driving. And the shopping, and the lawn maintenance. Guess who hangs a shelf or fixes a cabinet door when it needs to be done. As for me I’m pretty healthy and strong but I am no stranger to pain. I have a failed fusion in my back L-4 and L-5. There are 4 four inch titanium screws in my back.  Basically I am in constant pain. It hurts to sit, stand, walk, move, have sex, sleep, eat, and everything else you can think of.   With all that said Marci has an auto immune desease that is literally destroying every tendon in her body.

What would it be like if ALL your tendons hurt?  In your hips and butt you have large tendons that connect your muscles to your pelvis bone. If those tendons were deteriorating it would be excruciating to sit. It would hurt to walk or even lay on your side to sleep. That is where the pain started in Marci over two years ago and it has gotten progressively worse.   

We went to the doctor two years ago when the pain first started and they tested her for Rheumatoid Arthritis it was negative. Then the doctors said she had Bursitis. They said there were Bursa sacs causing inflammation in her butt and hips. They gave her massive doses of steroids and painful Cortisone shots which in her case did nothing to relieve the pain. Do you know why? Because she didn’t have bursitis. It was then that she was first given pain pills. They started with Loratab, then went to Oxycodone, Oxycontin, Roxycodone, and now she’s on Morphine.

The pain that started in her hips and butt is now in her Achilles tendon, her wrists, elbows, knees, and still hin her hips worse than ever. She can’t pick up a plate of food. She can’t open a pickle jar or tie her shoes. The pain is also now in her fingers and toes. She wakes up in the middle of the night crying almost every night. She can’t climb the steps to go to bed without help or change her pajamas. She can’t take a shower without crying because it hurts so bad. There are so many things that most people do without even thinking about but Marci can’t do because of the pain.

Pain is only part of it. There is a psychological element. Yes she is seeing a head shrink and is on anti-depressants. Wouldn’t you be depressed if you were told that your tendons are deteriorating, you are going to be in excruciating pain for the rest of your life and it will get much worse? Also the doctor told her there is no cure. As a matter fact the doctors don’t even know what’s causing it. They do know that hr immune system is attacking the tendons. But what they don’t know is why. All the doctors can do is prescribe pain pills which at this point even Morphine isn’t helping.

I’ve watched my gilfriend’s condition grow steadily worse. I listen to her cry at night. I see the frightening amount of pain pills she takes and I worry about the future. What are the long term affects of so many drugs? Obviously her liver has to proccess all these pills.  Over the past few months she has talked about suicide. She told me that she talks to God in her prayers and several times over the past few weeks she’s told God that she’s ready.

I can’t blame Marci for feeling this way. I understand how she feels. Like I said earlier I have a considerable amount of pain myself. But I am Catholic and suicide is not a viable option. That’s how I feel but I’m afraid for her. How can I help her?

There’s also the money situation to think about. My girlfriend had a good job working for HSN. (Home Shopping Network)  Do I have to tell you she lost her job? She did. To put it bluntly her ass hurts and she can’t sit at her desk. We bought pillows and cushions, ass doughnuts, kneeling chairs and special made office chairs.  Nothing worked. In the end she lost her job. Did I mention I have four screws in my back? I can barely walk myself and yes I lost my job as well. I could tell you times are tough but I don’t need to. You do the math on this one. We have bills and zero income. I can honestly tell you I don’t know where my next dollar is coming from.

My intention for this blog is not to ask for money or even pity. What I do want is information. If anyone knows anything about Marci’s condition or maybe even a specialist that can help please email me. I’ll include my email and Marci’s in this blog. We also want to know if there’s anyone else out there that is going through something similar. I think if Marci could find someone to talk to it would be a huge help. Maybe there’s evena support group.

What about clinical trials? At this point we will try anything. Experimental drugs or even a witch doctor. We’re doing all the natural and herbal things, Glucosamine, Collagen, vitamins, etc.

Thank you for taking taking the time to read this.

Steve Zellers

 email:  steve@booksbysteve.com

email : wordshurt7@yahoo.com

email (Marci) luvu41762@yahoo.com

Below is a link that has a lot of medical info about tendons and auto immune deseases.

 http://www.1234yourhealth.com/Collagen_Key_Youth_01.htm

Bursitis, Tendonitis, and Tendinosis

Bursitis, tendonitis, and tendinosis are three of the more common collagen diseases affecting us as we age, causing us to look and feel older. Bursitis is caused by arthritis inflammation or by infection.(15) The joint areas most commonly affected are the shoulder, elbow, wrist, hip, back, and ankle. Individuals with bursitis will have pain, tenderness, and stiffness near the affected area.16 As a result, local muscle weakness frequently develops as a result of avoiding painful joint movements, such as those caused by climbing stairs.

Tendonitis, an inflammation of the tendons, has mostly been considered the cause of tendon pain and an associated loss of strength and movement. More recently, researchers discovered that most people diagnosed with this disease have no signs of tendon inflammation. Consequently, medical sciences have come to see tendonitis more properly classified as tendinosis. Today, the terms are used interchangeably.

Tendinosis/tendonitis is caused by a breakdown of the collagen-composed tendon tissue. Collagen contributes to the robe-like structure of a tendon and to its strength. When collagen breaks down, small tears appear in the tendon, weakening it and causing pain. This collagen disease can affect children and young adults just as those who are aging. It is especially wearing on those who perform repetitious task in their jobs, sports, or daily activities. Carpet layers suffer this affliction in their knees, writers in their wrists, and tennis players in their elbows. Resting the painful areas, applying ice, or taking pain relievers can successfully treat bursitis and Tendonitis/tendinosis. This gives the body time to repair and reproduce the cartilage damage … provided the body is still producing the necessary amounts of collagen.

Update to this blog   Dec 5th 2010

I posted this blog on May 5th 2009.   Marci is still getting progressively worse.   The pain has moved from her hips and knees to every part of her body.  Her hands, wrists, fingers, ankles,feet, toes, her shoulders and elbows and now her neck and even her jaw tendons are now inflamed. She cries in pain every night. She wakes up screaming in agony two or three tiimes a night and can no longer climb stairs. She still walks but only wth the aid of a cane or walker.  My wife is only 48 years old and she has less mobility than most people I’ve ever seen who are well into thier ninties. Her hands and feet swell every day because of the inflamation and it’s only a matter of time until she won’t be able to walk at all.

I want to thank everyone for all the response and for all the support.  All the response is also the reason I decided to update this blog.  We get the same old story from the doctors. They claim her disease is so rare that they don’t know what to do to help her. But I have a question.  If the disease is so rare, why does this blog get an average of four views per day for the past year and a half, for a total of 2103 views? People find this blog on search engines by typing, “All my tendons hurt” Pain in all tendons. Pain in butt. Tendons hurt. All my tendons hurt and on and on.

If this disease is so rare then how and why are so many people typing “all my tendons hurt” into seach engines every day?    I think the disease is much more common than doctors think. So many people have emailed Marci and I over the last year and a half since I posted this blog and say they are having the same problems.

I think there needs to be much more awareness and research done on this problem. It is heartbreaking. Marci has almost zero quality of life because she is always in too much pain to go do anything. She can’t work. She can’t sit through a movie. She can’t walk on the beach or anywhere for that matter. W don’t do anything. We stay home all the time because she hurts too much. She is taking frightening amounts of pain killers.  How is this story going to end I don’t know. I know it’s hard.  If you read my other blogs you know I also have pain and pain killer issues. I currently take way too many pain pills. I don’t know how this is going to end for Marci or myself. But I do know how dificult has been and it gets worse every day.  Some how, some way. we need to get more awareness and research.

Thanks to everyone for all the support. Please keep the emails and comments coming. They have been read and they do help.  God bless you all and happy holidays.

44 comments so far

  1. rivardau on

    hi marci, i know what you are going through – i’m having the same tendons problems. i’ve done the pills, even 4 surgeries reattaching my pectoral and bicep, and yet it just keeps getting worse, and other tendons have not been fixed yet. i havent been able to drive a car for 4 years now, i cant ride a bicycle either. and i used to work for railroad which i cant do anymore due to physical limitations. and i am (was) a transportation specialist.
    im still trying to get more things fixed but at this point even mayo clinic (3 of last 4 weeks i have been there!) sees what is happening, but dont know why, dont know how to cure it, and the surgeon is refusing to do another surgery, saying that if 4 is not enough, that a 5th will have very slim chance of success.
    i get by with help from many wonderful friends and my service dog. my family doesnt help much, bcs they dont understand, but my father has been running me up to mayo clinic and he finally sees and hears them saying there is not much hope of fixing or stopping the disease.
    i went back to univ part time, live in dorms so that others cook and clean for me, and when days are really bad and im stuck in bed, i instant message some friends and i use second life to escape and travel the world with my hot perfect body!
    hope this helps some, you can message me back privately and we can chat more about it all. keep your spirits up anyway, it is hard but you have a wonderful-sounding boyfriend who can deal with it, that is more than what many of us get.

  2. jeff smythe on

    Hi steve & Marci
    I just stumbled accross your site and read your post regarding Marcis’condition.
    I find myself in an almost identical situation.
    Mine started after taking a class of antibiotic called a fluroquinolone,namely Ciproxin.The symptoms began almost immeadiately in my case but I know as a fact that many others have had a delayed reaction after months or even years.

    For nearly two years now I have been in torturous constant pain.I cannot walk,stand,dress or even wash myself now after having been a very fit active individual.
    I have pain in virtually every tendon in the body and like you folks have tried every pain killer going to no avail.
    I dont know if Marci has at some point in the past been given one of this class of drugs(cipro,avelox,moxifloxacin,ofloxacin etc etc)but it may be an avenue to explore.
    all my very best wishes to you

    • Marci on

      Thank you Jeff I hope your doing well. I did take cipro 20 yrs ago. Let’s all keep praying for cure. My dr. is contemplating his own clinical trial.

  3. Gillian on

    Hi Marci,
    Have you done any research on MSM?. I take a teaspoon twice a day and have done for years now. It works on the connective tissue throughout your body helps the production of collagen. They give it to race horses for their ligaments and tendons when injured.
    It is readily available on the net and is quite cheap. A kilo should be approx. $30 and will last you quite some time. It is harmless and can be used with any other drug you take. Very bitter in taste so in the mouth off the spoon followed by a glass of water or juice. I have seen the most amazing recovers with this.
    Good luck
    Gillian

    • Marci on

      Thank you Gillian I’m willing to try anything at this point. Something has to help us. Prolotheraphy is suppose to help but not covered under ins and cost $250-$750 per treatment each body part one at a time. It’s excruiatingly painful to go through my doc did triger point injections to aggravate the tendons in my hips and butt to encourage healing. Trick the bodies immune system. It didn’t help me.
      Never give up please keep in touch.

  4. Jennifer on

    Wow, what a trip – I am having all the same symptoms and the drs are telling me the same thing. Well, nothing for the most part. they don’t know what it is. They want me to be seeing a Rheumatologist. I’ve been unable to find anyone or anything to provide information about this! I do know I was diagnosed with Crohns 2 years ago (this is an autoimmne disorder that attcks your intestines) and I had a baby last year. When I was diagnosed with Crohns I was experiencing several other smaller problems, like my hair seemed to be falling out more and I had developed really bad allergies and excema. Even at this point I was still very healthy, out and about all the time. Actually after the birth of my son i was in kickboxing, and a few weeks into it is when I had the first episode. My hip went out. It was like a Charlie Horse, but from the waist down the entire left side of my body, and it didn’t let up at all for over a day. I was completely disabled by the pain for 1-2 days, then could BARELY move a few days later. i had to hire a nanny to take care of my baby, and have since had to hire one a lot because it has attacked my left hip twice, my right hip once, each shoulder and one foot. All on different occassions and I am out of commission for about a week each time. So not only am I not able to work, but unable to care for my own kids! It’s beyond frustrating. The drs seem to just want to drug me up, and do tests and treat the problems as they happen. My next step is to see my homeopathic dr. I always thought they were sorta hocus pokus, and still do think most of them are, but when I was diagnosed with Crohns i found one that had been a physician for decades and turned to alternative medicine.. I liked this. He said most chronic ailments are caused by something you are “chronically doing” – (such as foods), especially autoimmune disorders, which is why dr’s can’t seem to explain these to begin with (their specialty is MEDICINE). So he did a blood test that said I had “sensitivities” to wheat, sugar, soy, and every other normal thing you find in food. He put me on this crazy strict diet and all my problems went COMPLETELY away within about 4 weeks, and after being on the diet for almost a year I felt in better shape than I did as a kid! i mean tons of energy, very physically fit, with great tone, and very positive (even about my diet!?!?!). When i got pregnant I went off the diet and he told me not only would my Crohns come back and all the other little ailments, but things would get much worse, the longer I stayed off the diet. These things are toxins in my body and they deteriorate and poison my system. OK so I am back on the diet and it’s only been a few days, but I am praying that it will make this problem stop recurring. My next step will be having all teh subluxations removed from my spine. I know that is a sorta hocus pocus thign too, but if you learn about it from a good practitioner it makes a WHOLE lot of sense. A lot of standard chiroprators are very oposed to it. it’s sorta liek when i told my gastrointerologist about the diet my homeopathic dr put me on he dogged it so bad and said it would put me back in the hospital. But see what he knew!! I will try to update you on my results. I believe the test I had to learn about my food sensitivities was called an Immunobloodprint?? I hope you guys will keep this active and post or email me if you find any “cure”. Did you try the MSM? Haven’t heard of it but I’m up for any potential solutins. I will get some tomorrow!

    • Marci on

      Please Jennifer email me so we can talk. And everybody else that is struggling with this horifically painful disease please contact me. email is luvu41762@yahoo.com, or on Facebook look for Marcia Price Newman.

      I desperately need to talk with others that are struggling with the same or similiar disease. I need your help.

      Thank you, Marci

  5. Marci on

    Thank you Jennifer for your response. I feel so misunderstood and alone sometimes. I’m going to ask about the immunobloodprint. I haven’t tried MSM yet. Please email me directly so we can chat. If it works even alittle bit the relief would be a blessing. I was diagnosed with IC interstitial cysitis and IBS that I healed naturally with colostrum but it hasn’t help with this painful disease. I wish you the best.

  6. Renate on

    Hi Marci,

    I found this when I was searching the internet for the weird things happening to me – some kind of bug bites are making my tendons terribly painful – to the touch and to move. My jaw locked for a week (can chew finally today), both knees are affected and my achilles. All of them have some sort of painful bug bites nearby. I’m trying to figure out if it triggered an autoimmune problem or some sort of viral flare – I’ve been reading some sort of mosquito disease in Australia causes something similar and afterward whenever someone gets bitten by a mosquito the symtpoms come back because it is a virus.

    Reading your plight I wonder if it is an infection – have you thought about lyme disease? See http://www.canlyme.com to find out about the problems of getting a diagnosis when you have it – the average is 7 doctors say you don’t have it before one says you do, according to one source. I have chronic lyme and found the best advice from the LymeStrategies group on yahoo. You never get it out of your body but you can get your health back – but it takes over a year of constantly keeping at it with some setbacks where you think you won’t get better. Some people get pain like you have from lyme.

    Regardless, I believe you’d do well to take high doses of vitamin C, and also read up on DMSO which is an NSAID that is especially effective against some kinds of inflammation. It cured my ganglion cyst in a week. Best wishes!

  7. Judi on

    Hello. I just stumbled across this blog while trying to figure out what is wrong with my tendons, and why they continue to deteriorate. I have had surgery on both elbows, and the right one twice. My dr. said that was rare and he had never had a case like that before. The surgeries were over 5 years ago. Now I am back to being in constant excrutiating pain in both arms from my fingers all the way up through my shoulders, and also my right hip. I was diagnosed several years ago with hypothyroidism and Hashimoto’s thyroiditis. I continue to take medication for the hypothyroid, but have been off my med(cytomel) for the Hashimoto’s for about 6 months. This is when the pain slowly started to come on. It has become rapidly worse in the last two weeks. I am in the process of having my lab work done for my TSH, and have already had my thyroid meds increased quite a bit. I don’t know if you have had your thyroid checked or have looked into Hashimoto’s Thyroiditis. If not, you might research it. I am hoping that once I get my thyroid back in balance that the pain will go away. Good luck to you, and let me know how you are doing, what you have tried, and if anything is working for you.

  8. Tammy on

    hello marci I am at my wits end too so much pain so many doctors and way to much med`s that dont help do anything but make me gain weight I have been told the following:tendons have loss their elasticity in my legs and buttocks, bursa sac inflamation,low back inflamation,buldging disc,thecal sac mass,synovial cyst in ligaments on spine,slight herniated disc,ruptured tendon on ankle,plantar faciaitis,thoroidism,hianal hernia,have had the following treatments:meds for pain,meds for thyroidism,meds for inflamation,nerve blocks although they tell me no nerves are pinched,shots in upper thigh on both legs, shots in the bursa,shots and surgery on plantar {feet}surgery on ankle wow what an ordeal that was,have had several cyst removed,mri`s or every body part I have,ct scans,milagram,lots and lots of xrays and blood work,physical therapy which made it worse, there is not one of the doctors I see can give me a single diagnosis and not one of them seems to understand I can no longer funtionI cant grocery shop without pain and then do nothing for 2 days afterward,cant clean my own house,cant garden,cant take trips that my husband and I were so looking forward to doing in other words I feel useless my whole body is starting to feel the way my back and legs and feet do I am now getting pain in my arms and upper back also in my ribs this is so unbelieveable I cant even believe there is not one single doctor to fix this or even name it please keep me up to date on your journey of pain so maybe I will have something to question my doctors on keeping hope!!!!Tammy

    • stevezellers on

      Tammy,
      Hi. This is Steve, Marci’s guy. Wow. I’m sorry you’re in so much pain and having so many problems. I can relate, I understand, more than you know. I read your comment to Marci. She wants to help you. Email her at luvu41762@yahoo.com. She is in a very similar situation. It’s heartbreaking, frustrating, sad, and tears at all aspects of our lives. So much of what you said is exactly true with us as well.

      My advice is for you to seek out and find a ‘pain management’ doc. A good one will help you manage the pain so you can function on some level. That’s also what Marci said you should do. I wish there was more I could offer you. You will be in my prayers. I hope you find the help you need. God bless.

      Steve
      steve@booksbysteve.com

    • Marci on

      Tammy please contact me: luvu41762@yahoo.com or facebook: Marcia Price Newman

  9. Elana on

    Marci,

    Please contact me, i may be able to help point you in the right direction.

  10. Kelli on

    HI Marci & Steve,
    OMG I stumbled upon your blog when I was doing a google search for ‘what causes sudden deterioration of soft tissue in young people’ because I too was a hard-body, in fact people used to call me little miss hard body, super athletic, super fit, etc. just like you when all of a sudden I felt like i had a really bad chest cold and was in remote place in washington state & these health practitioners put me an a very lengthy very strong dose of a fluroquinolone called Levaquin and not only did I feel worse it felt like every tendon in my entire body was literally being ripped from the bone; legs, arms, head, neck chest you name it. I made a trip to an E.R> and the doc there was freaked out that anyone had given such a small woman that much Levaquin, then I got a bunch of extensive blood tests, xrays etc and it was found that my antinuclear antibodies were off the charts among many other things being abnormal, then they diagnosed me with Lupus from the drug, that was a year ago and it has been a downhill battle ever since then, in & out of all kinds of docs from primarys to rheumatologists to neurologists,orthopedics, you name it and like you they all say they just have never seen Levaquin do this much damage but now I have 2 auto immune diseases; Lupus and Fibromyalgia, Raynauds, & have had frozen shoulder from my cervical spine down to my fingertips in my dominant arm for over 10 months now, they want to operate but the tendons in my entire chest have all shifted and disfigured and the government insurance I am now forced to be on wont pay for the chest to be operated on so here i sit a single mother with no income and no way to move my dominant arm and my chest feels like it will explode any day, all my blood work keeps coming out abnormal but no one will pinpoint what it is and how to fix it and like you I am in pain every single day . Disability says even with 14 disabilities I am not disabled enough to get any help, not even ssi or ssdi, nothing and I keep deteriorating too.
    every day it is another crackling hideous new pain and inability to move another part of my body.
    I dont know if you took any fluoroquinolones like Levaquin but I am telling you it is NOT just immediately following their use or within months after that you are seriously affected for life on this stuff or any of the garbage the Ortho McNeil Jansenn company says like oh, it only affects achilles tendons and only causes ruptures, it causes normal healthy happy active young and old alike to have their lives not just their tendons and other soft tissue to deteriorate and destroy their lives.
    I have tried and am on so much pain meds muscle relaxants, etc. am now a vegetarian except occasional salmon filets and soy for protein, literally tried it all and like you am finding no real help only band aids and I have no one but my young son and dog so I can definitely sympathize with you and your situation.
    There HAS to be an answer for what we as young women and the guys out there too have been exposed to and can cause so much extensive damage in so little time.
    Someone in the medical field HAS to know what to do except fill us full of pills and empty promises.
    I think these big pharma companies have a responsibility to fix what damage they have done and stop making excuses for ruining lives and our government has got to stop taking kickbacks and funding these companies and start helping its citizens.
    People at any good teaching hospital should be able to help us lead normal lives again.
    I personally feel like I am on a really bad episode of Scrubs when I should be on a really good episode of House.
    I would LOVE to be able to have a medical staff keep me until they found out what it was that was doing this to me and then be able to fix it like that like they do on that show wouldnt you?
    I wish you nothing but the best Marci:)

  11. Kristie on

    So I stumbled upon this trying to figure out what is wrong with my self.. I am losing my hair like crazy and my body hurts, My wrists, ankles, neck, knees, elbows, shoulders, feet, calves and back. I have little or no energy and it hurts to move some days are better than others and most days I have to push myself to do anything.. And it hurts so bad just to move I feel like a hypochondriac, cause everyday something else besides the normal hurts.. Lately hurts so much I can barely get out of bed..I hardly sleep as I am in so much pain, I haven’t been to the doctor for it yet as I wasn’t sure what the hell is going on.. I have been spraining ankles like crazy and have had this bump in my right arm for 5 months I went to the E.R. back in April I couldn’t move my arm they told me it was tennis elbow.. Well it has never completely healed and I didn’t want them to think I was just trying to get pain medicine.. SO I do my best to live with it but it is getting harder I have 4 children ages 8,7,2 and 1.. I am a stay at home mom and well I have been telling my husband lately how scared I am that there is something seriously wrong with me and I guess I am just scared to find out what.. I used to have thick hair now in the last 2 months it is so thin cause I lose so much when I shower.. I am getting really concerned I have my family and I am so scared that something is wrong and scared of how serious it could be!!! I am 34 I don’t know what to do where to start to even find a doctor and what do I tell them.. I wonder will they think I am crazy??? My husband is worried to death and so am I… My husband is compassionate but I am sure its hard for him to watch me like this he has confided in friends about it but not me Guess he doesn’t wanna worry me.. I also have thyroid problems but haven’t had it checked in about 2 yrs or so.. Then this morning I wake up and where the huge bump in my right arm near the elbow is this sore, looks like a bite but I don’t recall anything biting me.. I popped it of course and now its hot to the touch red and irritated… I am hoping someone out there reads this and can help me.. Tell me where to go what to do… How to find out what is wrong with me… Thanks Kristie my email address is tiredoflivinginpain@hotmail.com

    • Marci on

      Thank you so much for sharing. Please contact me at luvu41762@yahoo.com or Facebook Marcia Price Newman

  12. PJ on

    I am also having the start of pain in my achilles for no reason whatsoever i try not to walk or do anything but its aching especially at night. This is due to my recent diagnosis with Hashimotos autoimmune disease, i am pretty sure and from eating gluten. When I take magnesium it seems to go away. But I have also heard it is from ciprex if you look it up on wikepedia it says that there are not very good warnings and there have been legal proceeding against companies making this.

  13. PJ on

    Sorry not ciprex i meant to say third generation cephalosporings.

  14. PJ on

    Sorry X that last reply, my brain is not working right here is the list of antibiotics straiht from wikipedia that cause tendon inflammation, pain, and rupture….Baycip, Ciloxan, Ciflox, Cipro, Cipro XR, Cipro XL, Ciproxin and most recently, Proquin

  15. PJ on

    i recommend everyone on this site to read this article if this doesn’t convince you to go gluten and wheat free nothing will.http://www.greenmedinfo.com/content/opening-pandoras-bread-box-critical-role-wheat-lectin-human-disease

  16. Terri Stewart on

    Marci it CAN be better. Levaquin & Cipro seem to be the culprits. These drugs are “chemotherapeutical”. Millions must be going through this extraordinary pain & the FDA can be blamed for marketing & the doctors for not researching products before prescribing. One morning I was at the end & prayed. I stopped all my medicine except a small amount of pain meds on my own. God can heal you and He will if YOU believe He will. He has given the body extraordinary healing powers. The money will come too. Look for it

  17. Alyson Irvin on

    Hi, I am really sorry to hear about your girlfriend and her pain. I am just beginning down that road myself. Right now it is limited to my left ankle/Achilles tendon. I dont know if I have had Cipro, but you can bet I am going to find out now that I have read this blog.

    As for the autoimmune portion, have your girlfriend look into parasites, specifically hookworms. They are having a lot of luck treating autoimmune conditions with hookworms, odd as that may sound, in studies, and I am going to be seeking it out as a treatment myself as soon as I can figure out how and afford too.

    Good luck. My sympathy and empathy to you both.

  18. Julia on

    Marci,

    I am also having the same issues. I was diagnosed 3 years ago with Fibromyalgia after several tests, MRI’s and X-rays came out inconclusive. I had terrible leg pain with muscle cramps, spasms and shooting electric shock type pain all over my body. My husband and I conceived a child and in my second trimester the leg pain went away but my hips and pelvis started hurting terribly. My son is now 7 months old and for about a month now all my tendons have begun to give me problems. It started with my hips, and now is in my ankles, wrists, feet, fingers and neck. I have not seen the Dr about these issues yet as I am afraid that they are just going to say that it is Fibro. i do not think that it is. I do not know what to do.

  19. Tammy on

    hi marci and steve since my last post wanted to give you an update I now have been diagnosed with fibromyalgia so ok I think great now fix it ha they added more meds still in horrific pain I have researched fibro and dont doubt that that may be some of it but not all of it I just think they give me that lable because they dont know and dont care enough to find out we recently had a family reunion saw alot of family I havent seen in years we all got to talking and it seems 4 of us have the same symptoms one has been told MS the other 2 lupus and myself and one more fibro so could this illness be genetic my mom had fibro so she was told, my aunt too, now they are finding cancer in family members who have had issues for years and they are just now discovering cancer whats up with these doctors why can they not diagnose things also I have tried the help line on the leviquin law suit and I have had it and cipro given repeatedly and just recently was going to be given it again I told him no way give me something else but who knows that might be bad too but anyway because I could not tell them when I was first given these meds they said they couldnt help me so much for that , I am so fustrated I am like marci I tell the Lord every night I am ready but we know he does things in his own time , have been praying so hard for him to use a doctor to help me I dont think anyone can pray harder for relief than me haha, hope someone has an answer soon for us all ,,, keep the faith Tammy

  20. ROBERT-SYDNEY on

    hi there,

    I will write in part as the email will be lenghty.

    PART 1

    I can barely type due to tendons getting stiff but after reading the stories i must add my 2 cents i learned over the years of increasing pain.

    i think we all learned by now that there is no quick cure to our problems so please be patient with reading my post as it includes many stories which slowly pointed me to the most possible and realisitc solution.
    No, no, I am not cured, I have just realised what I am writing and hope you join me or tell me to do better.

    My story
    my story started when i was 14-15y/o. i was given antibiotics to treat my presistent tonsils/sinus infection. I was young and wanted a quick fix. I got one but I am paying for it tilll today. The treatment was repeated every year and/or when i got sick. i slowly noticed that each time i was given the drugs i got resistant to it so they gave me knew I was also getting sick easier and more often. My first symptom of a weak imune system was after 2 years when developed a regular outbreaks of eczema on both sides of my nose (first few years only right side) and dundruff. by the age of 20 i knew i wont survive another winter so i moved to australia, but it was already too late, my immune system was compromised. Note that before leaving my country (poland). i got sick even in Sydney, a cold blow of winter air or sudden change in temperature was enough to get me sick. again i was given antibiotics. in 2005 follow the last dose of the poison i developed dry mouth, food sensitivities, rush, allergies etc, i could not drink water or anything cold. i visited gastrologist, due to lack of any positive tests i was sent home. I had one thing they could help me with (at least then thought they could) which was white tounge (candida). I was given Lamisil tablets to try. In 2006 i developed left wrist pain follow a ganglion. I was told it was rsi. I lived with it and managed it my acupuncture and dry needling. In 2007 during my run I developed pain in my knees. I visited physios and nothing was helping. I felt as if my tendods were not supporting mmy knees and it was not safe to walk as the pain was getting worse. One day one physion gave me one exercise that helped me to manage that pain quite well. In 2007 I also strated developing upper back stiffeness and headaches in the afternoon after work. This got worse over months to the point I had them coming early in the morning. I managed them initially with plenty of physio and chiro. In 2008 I no longer got any help from physio, chiro was still ok. In 2009 my chiro started experimenting with my lower back and I developed disc buldge. On top of my pain I could not sit on my ass for motnhs (untill now). Chiro did not admit it was him (of course). I visited neurologist (nothing found), I went to rheumatologist, I was told jumpers knee and overworked due to computer work. In 2010 I visited musculosceletal doctro who for the first time told me it was CHEMICAL and told me about collagen. I did prolotherpay with little improvement. All GPs said it was RSI due to work. In 2010 June my legs started hurting. That is when I knew it was not funny. Here I am now barely able to type or walk.
    However, al these years of pain allowed me to prepare and learn so I can share with you. I was not waiting for the disease to come as I knew it was coming many years ago.
    End of part 1

    • ROBERT-SYDNEY on

      I feel real bad about all grammar errorrs in my above post, please accept my apology. I really need to type with one hand and cant afford to use mouse to fix typos due to increasing pain in flexors and shoulders.

      rob

    • npain247 on

      Robert I want to talk to you about all this. Do you have yahoo messenger? If so please im me. luvu41762 is my screen name just let me know who you are I have to screen im’s, lol.

      Marci

    • Marci on

      Rob Thank you for your reply. I appreciate your time. I know how hard it is too. Please contact me at luvu41762@yahoo.com or Marcia Price Newman on Facebook.

      Thank you,
      Marcia

  21. Jason on

    Hi marci and Steve.

    I stumbled across your site while looking for anything that might identify with my pain. I hope you guys are doing better.

    I dont know what I have and the doctors dont know what it is eaither. Im 32. I was diagnosed with hiv about five years ago and soon after came the tendon pain. The pain comes and goes though. I was off work for about 6 months and I didnt feel a thing . Now that I am working and working muscles the pain is back. It sounds stupid but , the pain has moved from my arm to my ankle, to my other arm and wrist , to my shoulder and now it has made a home behind my right eye, I have had a severe headach on the right side of my head for about 4 months straight now. Looking at my face you can see there is pressure on the right side of my face but the dr’s say they cant see anything wrong with my eye. The worse thing about it is otc drugs dont work and I cant get a single doctor to write me a pain presciption. About a week ago I had to act like a junky so i could get myself into the local methadone clinic. Finnally I cant feel the pain …for now. Hopefully someone will be able to tell me what this is inside me . My preyers go out to you . Dont give up and Thankyou for sharing your story.

    • robert on

      Hi Jason,
      HIV usually contribut3 to your intestine imbalance which will cause all these symptoms. Good diet is a must. I started mine only 4 months ago. Carbs are the worst, try googling Bee Wilder Candida die, I follow her instructions. It will take time (maybe years) but you will get better. Remember – the only help you get is from people who provide it to you for free, Bee gives all info for free on the web.
      Another thing I do is the alkalaine drink by Moreless on Cruezone. This is also a very interesting study to go through. All these took me 5 years to find so use it! I will provide more info once I se results. So far it is not early
      Rob

  22. Brandon on

    OMG thank you for creating this blog Steve. I have been having tendon problems for a few months now, though have had chronic pain in my lower back/right hip area for years. Have woken up feeling like my entire back is “sprained” for lack of a better word. I was diagnosed with carpal tunnel syndrome 20 years ago, though have continued to have symptoms dispite surgery. Recently,oddly after haveing some strange “bug type bites” my elbow became sore and tender to the touch. I was not able to put any weight on it at all or even touch it in a certain spot without having excrusiating burning pain. Then one day while climing into the back of a truck my knee turned in a specific way and it felt like it popped out of joint and since has gone out on me many times basically I just fell to the floor. I also have had immoblizing pain while walking, standing and sitting. Next I started to experience muscle sorness in my left forearm, which makes it difficult to lift items without assist from my right arm. And now just this week I am having similar pain and loss of stability with my right knee. I was laid off in August 2010,(3 months before being vested for retirement)and have no medical insurance. I too have noticed my hair falling out in the shower in the past few months. At this point I don’t really care about the cause I am terrified about the possible dibilitating ramifications. I am working on getting into a sliding scale clinic in the new town I have moved to since losing my job and house, but I have little hops anyone can help at this point. Glad to know I am not alone in this I was beginning to think I was going crazy.

    • robert on

      Hi Brendon,

      Try checking for Lyme disease, your bites seem to indicate that. Your previous RSI is not really relevant as it did not disable you for many years.
      Rob

  23. karen on

    Hi Marci, you are in my thoughts and prayers. I have a similar problem but not as bad as yours. Did or do you have joints that pop all the time?

    • npain247 on

      Karen in the beginning they popped alot. Hope your having a good pain free day.

    • Marci on

      Yes I hear my joints pop and click.

  24. robert on

    Part 2 – Solution

    Hi All,
    As I promised I am back with part 2 of my story. Please be aware that my condition with Tendons started recently, it destroyed my life quickly to the point where I lost everything, my wife left, I lost all savings, apartment, etc,the condition disabled me , cant drive or wolk more than 400m, sometimes even less. I suffered many other symptoms which started mostly after 2005 antibiotics.
    I have been doing very thorough research since then. Considering that our conventional medicine does not provide solutions it was obvious to me that we must find it in a natural healing! Over the years of buying staff and trying different herbs, diets miracle tablets, cleansing, detoxing and many more (including colonics, enemas etc) I learned one golden rule when it comes to the natural health advice:
    “Never listen to people who and trying to sell you something (a quick fix)”

    I must say I was lucky and never lost hope, I simply learned that one dayI did not have any symptms then I took antibiotics and all shit started happening. Over the years I slowly developed symptoms such as tendonitis in my wrist follow jumpers knee follow RSI and untill 2010 June/july I was told it was RSI related/work related. Now when I lost ability to use my hands and developed tendons pain in my legs people are telling tendonitis/fibromyalgia – bunch of idiots…doctors, took them 5 yrs to figure something I was suspecting years ago.
    The difference between me and your guys is that I was ready for it. My skill is research and ability to connects the dots. I managed to come up with the list of things that were common for people with similar conditions. I learned that almost 90% of them were taking antibiotics or things started getting worse after giving bearth. That led me to conclusion all the problem was in the small intestine. I slowly learned about foods that heal, importnat, easy to digest form of supplements, I leraned how to calculate my daily intake of foods and what was missing in my diet for the last 15 years. Everything started making sens but the breakthrough happened in May 2010 whenI finaly found one website that summarized all what I learned for me: mhttp://www.healingnaturallybybee.com/
    I simply could not believe it was just sitting there for free!!! No need to talk to anyone, just read and follow!
    But this is only the begining of my good news. I have started diet (without organic food, cause I could not afford it then) in July. I did not get better at all for month up until December!!! I finally started feeling a significant difference! Undeniable improvement, I started walking more, much more. My Ph in my mouth has also increased which let me understand that this oxygen theory and lack of nutrients has lots to do with the condition. Of course I am not healed but I got better. If you read peoples stories on this web you see that for some it took longer but they managed to get there too.

    Please heal yourslef and stop wasting money for doctors. I was diagnosed with all possible crap you can imagine, visited at least 4 times rheumatologists, proffesors at hospitals, many GPs, only to find out there was no cure. Nobody looked logically at the way I developed all the pain and condition, nobody believed it was all drugs that caused it, of course they did not! they would have to stop making money by telling drugs are bad.

    Anyway, thats it, thats what I learned. For those who really want to learn something more please note that many of us say that there are days when we can walk more and when the symptoms get worse. It took me years to learn tat and many notes in my diary but I finally got there. I noticed that I suffer the worst 2 weeks from the full moon, I learned that this period when our body tries to detox and does not take as much nutrients (the worst form me is the second week). The next 2-3 weeks up untill the full moon is where we start feeling better as our body takes up the nutrients from food. But this info is only for those very sensitive to theit cycle, it really took me years to learn that. My symptoms are obvious, I also get eczema outbreaks on my face, I can predict the day when it exaclty hapen, my digestion goes bad, my skin becomes dry like hell, my lips break. But this is now getting shorter and shorter as I deliver more nutrients to my body. I know now I will get rid of that too.

    Good luck to oyu all.
    Robert from Sydney Ausralia

  25. npain247 on

    Thank you all so much for your replies. I apologize for not responding to each and every one of you. I will do my best to write daily about any new info, research etc.

    Don’t Stop Moving, Marci

  26. Stuart Siegel on

    I have a practice in rheumatology in Canada. Did you have a little bit of scalp itchiness that you perhaps did not attribute to psoriasis? Do you recall the symptoms starting between a month or two after an episode of food poisoning, eye infection, or a genitourinary infection? Do you have problems with your eyes? Do you have pain in your spine? Without seeing you I cannot give you a diagnosis, but what is being described here sounds like it could be either of Reiter’s Syndrome, Psoriatic Arthritis, or Ankylosing Spondylitis. Unfortunately, no one test is absolutely definitive in giving a diagnosis. It is less likely, but it could also be a manifestation of diffuse systemic sclerosis or Lupus, so tests should be done for ANA, and a Scleroderma blood panel. A negative ANA might be positive a year later just so you know.

    You should see a rheumatologist ASAP, and if you have already, get a second opinion, and even a third opinion. There are some very effective medications out there that could bring your symptoms under control (Remicade, Enbrel, Humira, and Simponi).

  27. Nan on

    Greetings. I am not sure if you are still reading or updating here, but I recently found you because of chronic whole body pain and weakness I am experiencing.

    In trying to get to the bottom of this, I came across Ehlers-Danlos Syndrome. which, actually fits me well. I do not know if your girlfriend has/had hypermobile joints of any kind or if this applies– but it might be worth taking a look.

    unfortunately, it does not offer a cure, but it does offer some answers, support and research.

    Best of luck to you both,

  28. Rob Sydney on

    Hi All,
    I thought I lost your web, well I am back!!!After 5 yrs of trying to figure out what the heck was happening to me I finally managed to get there before it was too late. Yes, the diet is extremely important but it will take many months for it to work unless you introduce some commonly taken digestive enzymes. Of course it is all up to you to try but it worked for me and considering that I had exactly the same symptoms and much more I can assure you we are dealing with the same problem. It took me 5 months on the diet plus the enzymes before I noticed a very serious improvement!! You would call me crazy if I told you about how it all happened but let me tell you the basics, I went to one of the GP who is also a naturopath. He suggested that antibiotics could harm my small intestine and I am no longer producing all the enzymes. I was given Creon 4000, I noticed very little difference after the first 3 months but after the 4th month I could definitely say I was back to life again, it will still take another 3-4 months but I can walk again with little pain. Please try to cut your carbohydrates and introduce digestive enzymes. We all took antibiotics so we all damaged something in our digestive track and considering that we all suffer from tenon pain etc I simply think you cant loose anything and only gain if you try the enzymes!!!

    Give yourself 3 months, drug is not expensive if you get the script.
    Good luck,

    ps
    my digestion is far from being perfect but for sure I get the nutrients needed to support my life.
    I was almost gone, I could not stand the pain and new I was shrinking, my disc would cause more and more pain, now I feel it less and less as the muscle are going back to normal. All of my injuries in hands are also almost gone and the neck is almost there. Please cat your carbs and most important start enzymes asap, my digestion is much worse then yours and I am still recovering. Most of you do not even complain from digestion problems. That is a good sign, if the problem is Candida due to overgrowth the diet will will bring it under control if the problem is due to the damaged intestine and lack of certain enzymes you will fix it by Creon. I tried different enzymes years ago when it all started but it did not work, I do not know why? Was it due to the type of enzymes or diet. Based on what I learned I think it was the high in carbs diet I had. Anyway I now know whats wrong so I can play with it.

    God bless people, I can walk again, I went to the gym last week but it was too early.

  29. Marci on

    Thank you Stevie for writing this for me. I’m so grateful to have a loving caring man like you fighting for me.

    I just want to thank each and every one of you for your response. I’ve tried it all and so far nothing is getting better. But I sure have learned alot and I’ve found a great support group on line.

    Best wishing to all,
    Marcia Newman

  30. Tammy on

    well I am back again and still no relief for any of us I see, tonight while watching T.V. there was a lady who had been having most of our symptoms for over 10 years she had several, doctors. test and diagnosis and was doing what I have now developed along with all the other and that is digestive and bowel issues after numerous test and doctors she finially got help and her diagnosis was pernicious anemia (hope thats spelled close enough for you to look it up) anyway it is where your body will not absorb B-12 and can be fatal and debilitating so heres something else that may be a possibilty, throughout the years I have researched so much it can be till I am soooo confused no wonder doctors have a hard time themself but at least I havent gave up like they have I am still hoping to find answers theres way to many of us with these symptoms for it not to b something besides fibromyaalgia , nerves or in our heads …keeping the faith Tammy


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