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I'm going to introduce myself !

Sep 12, 2016 4:22 AM

I'm new! My name is Dani and I'm a 34year old with like 5 million things going on. I have DDD,Spinal stenosis, Fibro, Migranes, Daily headaches,just to name a few. And with those comes chronic pain. I'm on many drugs. Gabapenton, baclofen, hydroxizine, and a mood stabilizer. Just a couple. Non of which are of much help . Sleep is pointless for as soon as I fall asleep I jerk away;if I get to sleep in tge first place my back is killing me , my hips as in fire.
I went to get my eyes checked Friday, they dialated my eyes and found something wrong with my right optical nerve; which I have to go back for more testing. Since then I have had a headache. It will go from headache to migraine and back again in a cycle.
I'm a mother of three beautiful children. My oldest Alivia is. 14, she is in Cheer , acro,hip hop, FFA, drama club. My son Gavin is 1o and in football, tap, hip hop,archery, basketball, and baseball. My youngest is Evangelina who is 8, she is in Girl Scouts, cheer, acro, hip hop, tap, ballet, basketball, and baseball. We found out two days ago my youngest, Eva, has spondiloysis, she's only 8. I fear she will be in pain her whole life. My baby doesn't deserve that.
Anyway. That being said.I try to be at all events my only day off being Sunday. And I'm so exhausted all I want to do is sleep. That is not fair to my kids.
If anyone has any advice please share.
Also the herbal supplement I have been taking, the only thing helping with the pain and fatigue and anxiety, called Mitregrayne Specosia, kratom, ( a ground up leaf from a tree from Indonesia, or southern Asia, related to coffee,) with O reported deaths,like with MJ; the DEA is trying to make it a schedual 1 drug. In one year there were almost 3o thousand deat ha form opioids. And in1962& 2 010 there was a Patten put out for the alkaloids within Kratom to make a synthetic of the same natural and organic plant. Sorry to blubbler. But my life was just getting good. And now they are wanting to take it away.
If anyone scraggly reads this all, I thank you!

Sep 12, 2016 6:01 AM

Well hello Danali101 and welcome! I am sorry to hear about your situation and I unfortunately do not have any advice I only have 1 son and when I am not able to attend his events I don't ! It might make me a bad mother but we have a very close relationship. He is 14 and has witnessed first hand what Fibromyalgia has put me through. His suggestion for me is always " take a nap mom you might feel better!" He is disappointed that I can't be like other moms but he says he wouldn't want another mom! I don't know what medication you are currently taking but I am sorry that it will be classified as a stronger drug. I am sure people will be along with some great advice! Good luck and again thanks for sharing!

Sep 12, 2016 6:14 AM

Hello and welcome. Thank you for sharing we are all here to help and be a rock x

Sep 12, 2016 8:31 AM

I empathize with your pain. I have fibro and osteoarthritis too. Please think of yourself when your pain is bad. We have to take care of ourselves first. Your children will understand if you miss a game or two.

Sep 12, 2016 8:42 AM

Welcome Denali you have now found a great support system. We can all share our pain share our desperation and our joys. I'm 41 with a 5 year old step son, newly married. We share alot in common. Talk to your doctor about trying ldn. Low dose netrexal. I feel like this would be a great step to help relieve the fibro for the explanation you gave.

Sep 12, 2016 9:36 AM

Hello Danali101, I'm sorry to hear of your experience with pain. It is not easy. Joining this great forum allows you to get the understanding from people with similar issues and it can be quite informative, and inspirational.

Sep 12, 2016 11:21 AM

Welcome aboard Dani. It's nice to meet you. I am sorry that at your young age you are having such problems. You've come to the right place. We come from all over the globe, have many different diagnosis but all share the common bond of chronic pain. Know that it's a safe place to vent, get information and most of all LAUGH!! I for one am definitely off the rails and will probable joke at posts to give you a laugh. It's just who I am so please don't take offense. Sit and stay a spell. In sure someone will come up with some suggestions.. {{{Hugs}}}💕

Sep 12, 2016 2:51 PM

Hello Danali101, welcome to the pain people app. We are all glad you are here. I,too, have DDD, spinal stenosis and sponsor. Also fibro, chronic pain Synd & sciatica, scoliosis & neuropathy. While I am on several prescription medicines, I also use mj tincture for pain. It is not easy. Everyday I struggle to cope. It would be in your best interest to take care of yourself & rest when you need to. I think your children would understand. Try to get some gentle exercise as it may help the pain & your stamina. Be frank with your family about how debilitating your health issues are. Maybe they Weill want to help u. You are not alone.💕

Sep 12, 2016 3:24 PM

Hello Danali101, I can feel your pain, I have 2 teenagers one in football and the other in band and cheer and choir so making time is not so easy you bounce around from place to place and your body take's the beating, I don't have fibromyalgia but I do have migraines and back issues and Sjogrens syndrome and osteoarthritis. This is what I do, I listen to my body and rest before any of the functions and I enlist the help of my family to help me. Take care of yourself,you are no good to your babies if your not at your best, so listen to your body and rest. Hope this helps you. Welcome aboard and hope you find all fighting tools you need to help you get through your worst of times and even your best of times, we are here for you.

Sep 12, 2016 4:23 PM

Welcome, I went through the same, I feel your pain. My three loved basketball, soccer, drama, rock climbing. There all grown now with husbands and total of 6 grandchildren I love them all. I've used many things through the years, tramadol 50 and 100(currently on), tens unit, masage, chiropractor, my pain clinic has gotten me to do cortisone shots, as well as novicain? injectins muscels, lidocain patches I loved these but insurance does not cover anymore. I've had some bad reactions to my med and am trying to take suplements based on my health problems. This past year I've used pintrest to help me decide wich ones. I've just added turmeric powder capsules. Vitamin d my painclinic tested me for fatuge. If you try anything make sure to look it up first. I have found that most doctors do not deal with diet and supplements unless you ask or do on your own. This has been my experenc. As well as the one for joint health I think that one has helped as well. I hope you find some relief I used to have to nap when the kids where in school to function when they came home. I became a single mother when my disability got to much and I had to ask for more help.

Sep 12, 2016 4:49 PM

Welcome, I too just recently joined and love love the support here!! I wish I had some definite suggestions ... But appreciate the info on kratom .. I have chronic back pain and fibro .. and a wonderful son with mild autism .. I struggle trying to do it all too ... And usually can't... Not sure if medical marijuana is possible where you at .. lots of positive comments about helping with sleep.. something I'm considering since a lot of meds havent agreed with my system ... So glad you are here and shared your story ... Thank you.

Sep 16, 2016 6:12 PM

Welcome to our community family Danali101! First let me say I'm amazed that you are able to shuffle so many activities with your children. You have a right to be exhausted, chronic pain or not! 😉
I'm so sorry you are suffering with so much so young, and it breaks my heart your little Eva has spondylosis. But hopefully she will learn coping methods to help her throughout her life.

I have suffered chronic pain since 1991 from DDD, migraines, TMJD, OA, migraines, fibromyalgia, sjogrens, and many other issues. I started taking epidural nerve blocks (ESI's) from 2012-2014 all down my spine, and it brought me the greatest relief from the spinal & sciatic pains, even headaches. But in 2014 the headaches and arm neuropathies came back. This year I had my third cervical disc fusion (ACDF), where they did a bone graft, aligned my cervical spine and removed multiple pockets of bone spurs inside the spinal column area. My headaches are totally gone, the neuropathies have improved, and surprisingly today my hubby noticed my hand tremors have learned. Now I'm not suggesting you have surgery, but only letting you know that if things have changed in your spinal symptoms then you should see an orthopedist or neurologist. Maybe there is something they can do to help give you more long term relief. My nerve blocks were done by a pain care specialist.

Following suggestions from community members I looked into and started various supplements, based on identified deficiencies and discussions with multiple doctors. I now take D3, magnesium, iron, B12 & folate (B9). I also do gentle exercises and relaxation. I learned to listen to my body to determine if it was a needed rest day or not. I've reduced my sugar and carbs intake, losing weight in the process, which is beneficial to my OA knees and hips and spine. I rarely if ever have colas and limit my caffeine intake. My sugar comes from mostly fruits and veggies, except my ice cream...lol, it's carb smart Bryers. Many on here voucher for dietary changes benefits before I had to do it for health reasons. It was hard the first 1-2 months, but it's ready now.

Pacing activity with rest is very important, so if you know would have a busy day, rest the day before and after. Stay hydrated also, especially in active times; use umbrellas for shade in the hot outdoors. Be honest with your family and explain that you may not be able to do everything. See if a family member or family friend can help out some. Take care of yourself first or you will not be of help to anyone else. It takes time to learn what does and does not work for you. Each of us are different and there's no one sure thing for all. I'm allergic to most pain meds so I reserve the rx pain med for fibromyalgia flares & surgeries. I've built up a high tolerance; where I wait until a 7-8 to take the rx med, my sister takes it at a level 4-5 (she has no pain med allergies and a low tolerance). Read through posts and hopefully you can find other suggestions, and methods for coping through the pain easier. Hugs love & prayers! 🙂💕🙏🌸

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