njdev95av
New member
- Joined
- Sep 12, 2016
- Messages
- 8
- Reason
- DX FIBRO
- Diagnosis
- 04/2000
- Country
- US
- State
- NJ
I have been a lurker on Fibromyalgia forums for years but I am a pretty private person so I never joined the forums and online support groups because I didn't want people to feel sorry for me. I have finally had some success in treating my health issues and decided it was time to share.
a brief background first.
I was, at the time, one of the rarer juvenile fibromyalgia cases. Diagnosed when I was 16 after having unexplained chronic pain symptoms since I was 11. I was quite the miserable child, even before the chronic widespread pain set in I had migraines and specific joint pain as early as 8 years old. with the pain came depression followed by severe anxiety and doctors telling my parents that I just didn't want to go to school so I was making it all up. When I was finally diagnosed I had been going to Boston children hospital and one of the physical therapists suggested fibro to one of the doctors. My first anti-depressant was at 11 and I have bee medicated ever since. For so many years my life was about finding whatever medication I could use to manage my symptoms since they don't actually know what causes fibro. I barely managed to get through school, not because of my grades but because of my attendance. When I went to work I kept thinking if I just kept going the symptoms would plateau and I would learn to live with it, but they never did. One thing I learned over 20+ years of this is it can always get worse. I lost my ability to work 4 years ago and lost what little independence I had needing to move back in with my parents because of it. I chose to isolate myself because I felt guilty not being able to hold my own with my friends and family to the point where I only interacted with as few people as I had to. I was waiting to die.
Now onto the better news, a few months ago my newest gastroenterologist (one of the best IBS drs in NJ) wanted to do some test over. I went in for my 6th endoscopy and 2nd colonoscopy (after fighting with the insurance for almost a month to get it covered). He wanted to do the tests himself to make sure nothing was overlooked, and he found something. I was found to have lymphositic colitis. it is a fairly rare form of microscopic colitis that can have all the symptoms of auto-immune, UC or crohn's but won't show up on any of the tests and will only be found if the dr is looking for it specifically. there are two kinds, I have lymphositic, the other is collagenous. they can also be a cause for vitamin and mineral absorption problems. After this revelation i was prescribed several new meds including antibiotics, GI anti-inflammatories, a stomach coating med to help the severe damage heal. I was miserable. the new meds were making me feel even worse, which considering where I started was really bad. after a month with no improvement I started taking some essential oils, both topically and internally, that my neighbor recommended. she has suffered from thyroid issues and RA for years and the oils were helping her so i figured I might as well try it, after all nothing else was helping. It took about a week for me to notice a difference but I started feeling better. I had called my dr and discussed coming off the new meds and he was willing to let me try. by the time I went to see him for my next appointment I was feeling much better, good enough that we discussed coming off all my other medications. 4 months ago i was on 5 daily meds and 4 as needed, now I am on one (Protonix) which if I am still doing well I will be off of by November. no one (including my drs) ever thought to watch out for over-medicating. I never knew how much damage was being done by the meds prescribed to help my symptoms until I found a way to come off them. I am now on only one medication and feel better than I can ever remember feeling in my adult life, I am only 32 fibromyalgia has been my whole life. I do still take some essential oils internally as well as several supplements but they are working better for me than the medication ever did.
Just remember that not all Essential Oils are created equal. some have synthetic chemicals that can not only make them burn you but also get absorbed into the body and add to the symptoms you already have. look for a high purity oil like Young Living or DoTerra. they are more expensive but worth it in my opinion. If you do not have a bath you can add a few drops of an essential oil to a carrier oil (coconut or olive work well) and massage specific areas, I use peppermint and wintergreen daily for pain and clove and cypress for circulation issues.
For several years I have been on a more natural diet, I try not to eat processed foods, refined sugar, dairy, gluten, gmo's, or soy. I have done very strict allergy diets in the past with limited results but I do think our health is negatively effected by over processing and less nutritional value of the foods we eat so I try to eat healthy most of the time. I also make sure to get out and walk the dog as much as possible, sometimes easier said than done but exercise is important to keep everything moving as it should. on really bad days when I can't walk I at least do some stretching. I have found that not doing anything will only make it that much harder to get up the next day.
One last thing I am taking is a high potency chlorophyll supplement, I use Vitamineral Green. It has a lot of vitamins and minerals and the days I miss taking it I really notice a drop in mood, energy level, and an increase in my pain and head aches.
I am lucky to be surrounded with people who support me both emotionally and physically and know that I are not alone even when I sometime wish I was. If anyone wants more info on the oils and supplements I use just let me know, I recommend doing your own research on the subject and talking to a doctor you trust (who is hopefully open to alternative treatments as mine was) before taking anything internally. I hope my experience helps to bring hope to some of you, I know hope can seem like a double edged sword when things just seem to keep getting worse the more you try, but I like to think everything I went through prepared me to help others get through similar experiences. I will post periodic updates on how I am doing and if the more natural approach keeps working. It really has helped me.
Link Not Allowed!
a brief background first.
I was, at the time, one of the rarer juvenile fibromyalgia cases. Diagnosed when I was 16 after having unexplained chronic pain symptoms since I was 11. I was quite the miserable child, even before the chronic widespread pain set in I had migraines and specific joint pain as early as 8 years old. with the pain came depression followed by severe anxiety and doctors telling my parents that I just didn't want to go to school so I was making it all up. When I was finally diagnosed I had been going to Boston children hospital and one of the physical therapists suggested fibro to one of the doctors. My first anti-depressant was at 11 and I have bee medicated ever since. For so many years my life was about finding whatever medication I could use to manage my symptoms since they don't actually know what causes fibro. I barely managed to get through school, not because of my grades but because of my attendance. When I went to work I kept thinking if I just kept going the symptoms would plateau and I would learn to live with it, but they never did. One thing I learned over 20+ years of this is it can always get worse. I lost my ability to work 4 years ago and lost what little independence I had needing to move back in with my parents because of it. I chose to isolate myself because I felt guilty not being able to hold my own with my friends and family to the point where I only interacted with as few people as I had to. I was waiting to die.
Now onto the better news, a few months ago my newest gastroenterologist (one of the best IBS drs in NJ) wanted to do some test over. I went in for my 6th endoscopy and 2nd colonoscopy (after fighting with the insurance for almost a month to get it covered). He wanted to do the tests himself to make sure nothing was overlooked, and he found something. I was found to have lymphositic colitis. it is a fairly rare form of microscopic colitis that can have all the symptoms of auto-immune, UC or crohn's but won't show up on any of the tests and will only be found if the dr is looking for it specifically. there are two kinds, I have lymphositic, the other is collagenous. they can also be a cause for vitamin and mineral absorption problems. After this revelation i was prescribed several new meds including antibiotics, GI anti-inflammatories, a stomach coating med to help the severe damage heal. I was miserable. the new meds were making me feel even worse, which considering where I started was really bad. after a month with no improvement I started taking some essential oils, both topically and internally, that my neighbor recommended. she has suffered from thyroid issues and RA for years and the oils were helping her so i figured I might as well try it, after all nothing else was helping. It took about a week for me to notice a difference but I started feeling better. I had called my dr and discussed coming off the new meds and he was willing to let me try. by the time I went to see him for my next appointment I was feeling much better, good enough that we discussed coming off all my other medications. 4 months ago i was on 5 daily meds and 4 as needed, now I am on one (Protonix) which if I am still doing well I will be off of by November. no one (including my drs) ever thought to watch out for over-medicating. I never knew how much damage was being done by the meds prescribed to help my symptoms until I found a way to come off them. I am now on only one medication and feel better than I can ever remember feeling in my adult life, I am only 32 fibromyalgia has been my whole life. I do still take some essential oils internally as well as several supplements but they are working better for me than the medication ever did.
Just remember that not all Essential Oils are created equal. some have synthetic chemicals that can not only make them burn you but also get absorbed into the body and add to the symptoms you already have. look for a high purity oil like Young Living or DoTerra. they are more expensive but worth it in my opinion. If you do not have a bath you can add a few drops of an essential oil to a carrier oil (coconut or olive work well) and massage specific areas, I use peppermint and wintergreen daily for pain and clove and cypress for circulation issues.
For several years I have been on a more natural diet, I try not to eat processed foods, refined sugar, dairy, gluten, gmo's, or soy. I have done very strict allergy diets in the past with limited results but I do think our health is negatively effected by over processing and less nutritional value of the foods we eat so I try to eat healthy most of the time. I also make sure to get out and walk the dog as much as possible, sometimes easier said than done but exercise is important to keep everything moving as it should. on really bad days when I can't walk I at least do some stretching. I have found that not doing anything will only make it that much harder to get up the next day.
One last thing I am taking is a high potency chlorophyll supplement, I use Vitamineral Green. It has a lot of vitamins and minerals and the days I miss taking it I really notice a drop in mood, energy level, and an increase in my pain and head aches.
I am lucky to be surrounded with people who support me both emotionally and physically and know that I are not alone even when I sometime wish I was. If anyone wants more info on the oils and supplements I use just let me know, I recommend doing your own research on the subject and talking to a doctor you trust (who is hopefully open to alternative treatments as mine was) before taking anything internally. I hope my experience helps to bring hope to some of you, I know hope can seem like a double edged sword when things just seem to keep getting worse the more you try, but I like to think everything I went through prepared me to help others get through similar experiences. I will post periodic updates on how I am doing and if the more natural approach keeps working. It really has helped me.
Link Not Allowed!
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