Aa
Chronic excruciating pain
I am a 21 y/o female and have a chronic pain problem for as long as I can remember. DRs have come to the conclusion that it is autoimmune.
As a child I was very active- I played all types of sports but always seemed to get injured. I was in the hospital at least twice a month with sprains, fractures, breaks etc. The doctors told me I had long ligaments and I would eventually grow out of it. Along with my frequent breaks I was constantly sick with strep throat and sinus infections (which stopped at age 11 when I had my tonsils out).
When I was 11 I broke my knee and ended up on crutches for 3 months. Immediately after getting off crutches my right wrist was in constant pain, and was swollen. I was told I had pinched a nerve from being on crutches for so long. But the pain and swelling just got worse. I ended up loosing almost all function in my right wrist. I was told I had "Pain Amplification Syndrome" and to take 6 advil a day.
At 14 I started getting decapitating migraines. I began visiting the hospital again on a regular basis for migraine treatment. Along with the migraine symptom, I stopped sleeping. I would be up until the wee hours of the morning, and once I did fall asleep, I was not able to stay asleep.
At 17 the pain I was feeling in my wrist moved to my knees, and then my hips. And by 18 it was all over my body- all joints and all muscles. I was still having migraines. I also started having problems with depression and severe anxiety attacks.
In April 2009 things got 150% worse. I wasn't able to do anything. I could not get out of bed, and when I did I was dizzy, clumsy and forgetful.
Now- at 21, I am in constant pain. I am extremely hyper mobile and my joints pop out of their sockets with extreme ease. I have seen rheumatologists, neurologists, pain management, physical therapy, orthopedists, and more. I have had more tests that I can remember. For the pain I have been on amitriptyline, neurontin, lyrica, topomax. I used a TENS unit for over a year. I have had, x-rays, cat scans, MRIs, nerve conductivity studies and so many more. None of the above have worked.
It was suggested that I have fibro, but after some pressure point and muscle tests it was decided that I don't.
The DRs seem to pass me around because no one can tell what is wrong with me. I was told that as I get older my disease is going to get worse, and that I am too complicated right now. They told me that hopefully as things get worse, it will become more clear what I have. But I can't wait- I feel hopeless and scared everyday. Things have gotten so bad that I am thankful to make it through the day.
Please help.
As a child I was very active- I played all types of sports but always seemed to get injured. I was in the hospital at least twice a month with sprains, fractures, breaks etc. The doctors told me I had long ligaments and I would eventually grow out of it. Along with my frequent breaks I was constantly sick with strep throat and sinus infections (which stopped at age 11 when I had my tonsils out).
When I was 11 I broke my knee and ended up on crutches for 3 months. Immediately after getting off crutches my right wrist was in constant pain, and was swollen. I was told I had pinched a nerve from being on crutches for so long. But the pain and swelling just got worse. I ended up loosing almost all function in my right wrist. I was told I had "Pain Amplification Syndrome" and to take 6 advil a day.
At 14 I started getting decapitating migraines. I began visiting the hospital again on a regular basis for migraine treatment. Along with the migraine symptom, I stopped sleeping. I would be up until the wee hours of the morning, and once I did fall asleep, I was not able to stay asleep.
At 17 the pain I was feeling in my wrist moved to my knees, and then my hips. And by 18 it was all over my body- all joints and all muscles. I was still having migraines. I also started having problems with depression and severe anxiety attacks.
In April 2009 things got 150% worse. I wasn't able to do anything. I could not get out of bed, and when I did I was dizzy, clumsy and forgetful.
Now- at 21, I am in constant pain. I am extremely hyper mobile and my joints pop out of their sockets with extreme ease. I have seen rheumatologists, neurologists, pain management, physical therapy, orthopedists, and more. I have had more tests that I can remember. For the pain I have been on amitriptyline, neurontin, lyrica, topomax. I used a TENS unit for over a year. I have had, x-rays, cat scans, MRIs, nerve conductivity studies and so many more. None of the above have worked.
It was suggested that I have fibro, but after some pressure point and muscle tests it was decided that I don't.
The DRs seem to pass me around because no one can tell what is wrong with me. I was told that as I get older my disease is going to get worse, and that I am too complicated right now. They told me that hopefully as things get worse, it will become more clear what I have. But I can't wait- I feel hopeless and scared everyday. Things have gotten so bad that I am thankful to make it through the day.
Please help.
Hi Aidan55, I was cruising the autoimmune site looking for similar stories. I have a form of dysautonomia, autonomic neuropathy which is usually from something the doctors tell me. So I'm going through a battery of tests which they think is most likely from an auto immune. I just wanted to ask you if you have ever had a QSart test? They are hard to find. But with your dizziness and some other symptoms, it might be worth a try. It's a long shot. Dystautonomia has many forms. But the broken bones and other stuff that is just awful but not part of it. But the joint mobility can be part of it. Neurologists are usually good at diagnosing this. There are only a few hospitals that have this test, I think I've found 6 or more. Anyhow, just wanted to give you a little information hoping to help. Like I said, only a light possibility, but worth a try. Good luck and God Bless! Tkimber
Thank you for your story Deb! It is comforting to know there are other people have (literally) felt the same pain i've been in. I saw a couple doctors who thought I was the only person with this disease...and i'm glad to know that isn't the case.
My only problem is, I don't know HOW to get my pain under control. I feel like i've tried everything from meds to PT to biofeedbak. In the hospital I was on morphine, and it is the only time I have been pain free in years. I've seen pain management doctors and they seem clueless. As needed pain meds (vicodin etc.) don't even touch the pain. Do you have any suggestions as to what to try?
I appreciate your input. Thanks again
Aidan
My only problem is, I don't know HOW to get my pain under control. I feel like i've tried everything from meds to PT to biofeedbak. In the hospital I was on morphine, and it is the only time I have been pain free in years. I've seen pain management doctors and they seem clueless. As needed pain meds (vicodin etc.) don't even touch the pain. Do you have any suggestions as to what to try?
I appreciate your input. Thanks again
Aidan
Your history is extremely similar to mine, down to the tonsils! I also have multiple medication allergies, severly limiting my reatment choices. I had breast cancer last year, and due to my immune system deficiencies along with the chemo, my immune system gutted out. I wund up hospitalized and having to cut my chemo cycle by half.
They key for me has been self-education. My docs all agree that I suffer from lupus, rheumatoid arthritis, Hashimoto's thyroiditis, osteoarthritis (I've undergone 14 left knee surgeries, including a Total Knee Replacement when I was 38) chronically, and a herniated lumbar disc compressing a nerve. I then have sufferd seizures acutely, attributed to synergistic medication reactions, but have been seizure free since 11/2008).I've also had cancer and underwent chemo, radiation, and surgery to achieve remission. Hopefully it not return. I have multiple drug allergies, including penicillin, cephalosporins, Cipro (and several of its cousins), several NSAIDs. Well, you get the idea I see a rheumatologist, pain manabgaement doc, oncologist, and neurologist in addition to my internist and GYN. You my want to see a pain management specialist located in a major medical center. I have an internal medication pump that delivers morphine and another numbing agent directly into my spine. I now no longer need to use a cane! Believe me, getting your symptoms properly managed will make all the difference in the world, and it sounds as if your pain in inadequately managed. The internal pump helps minimize side effects of morphine by its delivery system.
Good luck, and feel free to post back to me if you have any questions. I found that it made an incredible difference to my mental and emotional health to get my pain under consistent control. I do have to rely on some oral pain medications, but far less as well as with fewer side effects.
Deb
They key for me has been self-education. My docs all agree that I suffer from lupus, rheumatoid arthritis, Hashimoto's thyroiditis, osteoarthritis (I've undergone 14 left knee surgeries, including a Total Knee Replacement when I was 38) chronically, and a herniated lumbar disc compressing a nerve. I then have sufferd seizures acutely, attributed to synergistic medication reactions, but have been seizure free since 11/2008).I've also had cancer and underwent chemo, radiation, and surgery to achieve remission. Hopefully it not return. I have multiple drug allergies, including penicillin, cephalosporins, Cipro (and several of its cousins), several NSAIDs. Well, you get the idea I see a rheumatologist, pain manabgaement doc, oncologist, and neurologist in addition to my internist and GYN. You my want to see a pain management specialist located in a major medical center. I have an internal medication pump that delivers morphine and another numbing agent directly into my spine. I now no longer need to use a cane! Believe me, getting your symptoms properly managed will make all the difference in the world, and it sounds as if your pain in inadequately managed. The internal pump helps minimize side effects of morphine by its delivery system.
Good luck, and feel free to post back to me if you have any questions. I found that it made an incredible difference to my mental and emotional health to get my pain under consistent control. I do have to rely on some oral pain medications, but far less as well as with fewer side effects.
Deb
Hi!
EDS is my current diagnosis as of this year. I don't know too much about it, but i know it is genetic. And neither of my parents (or extended family) have EDS or anything remotely similar.
I guess I could just be the lucky one and got stuck with the damaged genes.
I also don't want to believe its EDS because there is no cure...and the thought of living in this much pain or worse is very daunting.
EDS is my current diagnosis as of this year. I don't know too much about it, but i know it is genetic. And neither of my parents (or extended family) have EDS or anything remotely similar.
I guess I could just be the lucky one and got stuck with the damaged genes.
I also don't want to believe its EDS because there is no cure...and the thought of living in this much pain or worse is very daunting.
It sounds like it could be Ehlers-Danlos syndrome, which is caused by a deficiency or defect in collagen. It causes hypermobility of the joints and can lead to joints easily dislocating or spraining. It's very rare, but those symptoms stood out... There are genetic tests available to see if you have it. It's worth asking about.
My problem was with my teeth. If you have amalgam (mercury) fillings in your mouth that could be the problem. If you have been getting vaccinations (mercury) that could be your problem. If you have been eating alot of the wrong kind of sea food (mercury) that could be your problem. Is your water pure. You should look at your enviroment and if there are hazards in it remove them. The book I recommended give a list of supplements you can take to detoxify your body.
Hi!
Steroid treatment has been suggested in the past. I have not been able to have it done because of my current health care situation (my PCP and specialists are in MA and I currently live in NY).
I was tested for thyroid issues a couple years ago, but everything came back negative.
Steroid treatment has been suggested in the past. I have not been able to have it done because of my current health care situation (my PCP and specialists are in MA and I currently live in NY).
I was tested for thyroid issues a couple years ago, but everything came back negative.
Hi!
I actually have seen a holistic doctor who put me on a diet similar to that- no dairy, sugar, gluten, wheat, nigh shade veggies etc. I was on it for 3 months and it didn't help at all I was still in pain all day/everyday. =/
I actually have seen a holistic doctor who put me on a diet similar to that- no dairy, sugar, gluten, wheat, nigh shade veggies etc. I was on it for 3 months and it didn't help at all I was still in pain all day/everyday. =/
I would insist on a referral to a major health center. There has to be an answer.
To help your current issues you might want to try the Lupus recovery diet. It is not just for Lupus but is for anything auto-immune. They say that gluten, dairy, sugar and animal proteins can cause inflammation. Scientific studies have been done to prove that this can dramatically reduce inflammation in your body. It is suggested that you try a 3 - 7 day fruit and vegetable juice fast to get your body going and then adding back foods one at a time. Some people just need to eliminate gluten, others just dairy while some need the full vegan diet. At the very least they advocate eliminating the 4 W's - flour, salt, sugar and dairy. It just might give you some relief.
To help your current issues you might want to try the Lupus recovery diet. It is not just for Lupus but is for anything auto-immune. They say that gluten, dairy, sugar and animal proteins can cause inflammation. Scientific studies have been done to prove that this can dramatically reduce inflammation in your body. It is suggested that you try a 3 - 7 day fruit and vegetable juice fast to get your body going and then adding back foods one at a time. Some people just need to eliminate gluten, others just dairy while some need the full vegan diet. At the very least they advocate eliminating the 4 W's - flour, salt, sugar and dairy. It just might give you some relief.
If you want to try a different approach check out the book "Prescription for Nutritional Healing". It will give you a list of supplements and natural things you can do to help your sympthoms. Maybe a diet which concentrates on raw fruits and vegetables will allow you body to heal itself. It is something you can try. Your body may be able to heal itself if you give it the vitamins and minerals it needs.
You should look at hormone related autoimmune issues. Your recent symptoms definately point to possible thyroid and/or adrenal issues that are not being looked at - or missed completely with in-appropriate testing to uncover what's really going on.
stella5349 - CL - thyroid medhelp.org
stella5349 - CL - thyroid medhelp.org
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