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Ashlylynn

New member
Joined
Nov 15, 2015
Messages
4
Reason
DX FIBRO
Diagnosis
10/2015
Country
US
State
TX
Hey all. I am 34 and was diagnosed last month with fibro. Been suffering with pain and fatigue the past few years. After all the tests and then more tests was diagnosed with fibro. Along with that I also have osteoarthritis. Have had 4 knee surgeries ( last one being a partial replacement) also have OA in my hips, shoulders, and back. It's been so frustrating. I can't do the things I want to do. There are days the pain is so bad I have a hard time getting out of bed, then other days the fatigue is so bad I can't get outta bed. How do you do you do it, how do you cope. How do you make your spouse understand that you can't help being so tired all the time. Make your kids understand your laying down again because ur sick and not that u don't want to spend time with them. Anyways sorry for all the gloominess, it's been a bad few days. Thanks!
 
Hi Ashleylynn..I cant type much today but welcome..i feel for you ...we have all been there... dealing with this illness and for some our loved ones not understanding. Hang in there. I will write more later but if you read back over recent threads you will find lots of advice an understanding from many people here who really do understand. Take Care
 
Welcome. I wish there was a magic way to make ppl understand but there isn't and never well be.
It's never easy as we just don't look sick do we,so what u have to do is make peace with yourself ,beating yourself over the head will just drain u more.
U are ill and u do t need to prove that to anyone here x
 
Hi Ashlynn,
Sorry to hear that you have been in a lot of pain and have had so much trouble with your knees. The fatigue is a beast. I think we all have had problems with fatigue and the misunderstanding of it with friends and/ or family; that's why this is the perfect forum to be part of. We can listen, empathize, and sometimes offer suggestions. Hang in there. A lot of research is happening and I am hopeful that we will see a breakthrough in our lifetime.
Peace :)
 
Ashlylynn,

I'm sorry you are having a tough time of it. There are many small things you can do that add up to help: First, have you had your vitamin D checked? It's a simple blood test butyou usually have to ask for it. Most FMers have low vit. D which can lead to more pain. heating pads, hot showers and baths-add a little lavender for a relaxing time. There are some vitamins and herbs that can help. My favs are magnesium malate and B-complex. I've also more recently added D-ribose that I have found gives me more energy. You didn't mention what you have done or read.

I know I'm dropping in from a long absence and haven't completely back-read all the newbies. There are many tips and tricks that can help. Unfortunately we are all so different that what works well for one may not another.

As to spouses understanding; I've been married-to the same guy- for 40 years this month. My dear one is very compassionate but I've found it is better NOT to burden him with it all. He knows me well enough to see when I'm having a bad day-usually. I DON'T expect him to understand-how could anyone unless they too suffer through this? On occasion he forgets my limits, (no, I don't think it would be fun to be in a truck ALL day bouncing around the dirt roads).I do dump ALL on my Savior Jesus. I don't think I would be alive but for Him as it would be so easy to have "instant led poisoning".

May you be blessed today and find those things that help.
 
Thank you all. I am having a better day today. Thanks for all the advice. I actually just got done with a 6 week course of vit d. My level was a 7, the rhemotologist was not impressed. Lol. Anyways I am so so happy I found this forum. It is nice to be able to vent to people who understand, and to read others stories. So I will continue to pray and coming here to help me get through those rough days.
 
Good to hear you had a better day today Ashlynn.

Ruralchick that was a very good post. I take some supplements and the thought of taking more pills is a source of procrastination. I know I need Iron, Vitamin C and Vitamin Stress B-Complex. I do like being pain-free or at least nearly pain-free though. So eventually I will have to take them, eh? 27 pills/ day then... ugh. :)
 
Ashlylynn,

So glad you are a bit better! I'll take all the days that are that way! Even a little is like a mini vacation.I'm glad for this site too.

Cheryl Ann, I'd hope the supplements wouldn't be so many or so expensive but there it is. It quickly becomes habit but is easy to be distracted and forget too! Even my dogs know that after I take these vitamins it's time to go outside. Haha!
 
As Willow says, and she knows, hang in there. You are not doing anything wrong ... you are a victim of a rotten disease. Even when we have been diagnosed ... me nearly 30 years ago ... we "feel" like apologizing for being sick. With a broken leg or some such, there's tons of compassion. When folks cannot "see" the illness, they do one of several things: give you tons of advice or names of doctors/nurses/love potion #9, give you strange looks because fibro doesn't "show", begin to ignore you because you can't behave as you once did, and worst ... they just don't care!

The most important thing for a mate ... kids ... friends ... is being able to say "I'm sorry" and maybe give you a hug. Frequently. This acknowledges that you have a serious illness. The most important thing you can do for yourself: do ONLY what you are able to do. That's all. Hard to learn if you'd been really busy and active ... but it MUST the top rule. Do ONLY what you can. Not what you "want" to.

I think of all the folks that have posted here ... my buds Willow, and LucyJane ... and we all suffer. We are in a different world with fibro, and we are now watchers on the sidelines of typical life. Not a choice. A nasty realty dumped on us. Ending up with ONE good friend who understands is like striking gold! You need caring. Now.

I've wanted to get back to posting here for a month. The combo of fibro, family trouble & a major dental catastrophe just dumped wet cement all over me! Add depression ... and well, you know. Keeping track of what today is becomes a tremendous task!

Be kind to you. Be patient with you. Be ONLY what you can be. Others, whoever they are, must adapt also. So ask for a hug and say "I'm doing the best I can now." Truly good wishes are with you, from PhillyFibro :)
 
Ashley,
I have Osteoarthritis too and some other undiagnosed pain condition, along with CFS and fibro. I just can't find the right doc for the other pain condition. Anyways, I am using large ice pad for inflammation every morning and use heating pad at night for circulation. I also found I must take magnesium for muscle pain,1000mgs to 1,500mgs, ask your doctor if its okay to take. With all my fibro meds. I take vitamin D, Super B complex, and glucosamine for joint pain. Rheumy said it doesn't work but my mom swears by it, so I'm trying it.

As far as the husband supporting and understanding, he needs to be educated about it. My husband went with me to a support group when first diagnosed, check your area for one and he read a lot. We got books from his best's friends mom, who has fibro, but check the library if you don't want to buy.

As far as your kids, I don't have any but love kids and my only suggestion is to tell them you have an illness that prevents you from spending the time you would love to spend with them and that you love them very much. If the kids are in any kind of school maybe they can show you stuff and share about their day, while your in bed, it is what it is. We can only do what our bodies allow.I know it stinks. Hope this helps
best regards,
Kristine
 
I'm sorry. You are so young to feel so terrible. I go through many of the same issues. Loved ones don't understand even when they try. As far as kids, when I'm not up for much, we will lay together and watch a movie or read books.
 
Thank you guys so much. The encouraging words are so very awesome and help me get through some days! This new reality sucks.
 
How have you been Ashlylynn since your original post.
 
Hang in there Ashlynlynn. I have been off for a while and feel like I'm an everready bunny with my posts the last couple of days. I don't know if there is a way to search by posts I've commented on, but I posted one about half an hour ago about starting your journey. I'm trying to remember who asked the question, dang fibro fog. Anyway, it's a little long-winded, but I hope worth the read. My husband wasn't unsupportive per se, but he became my rock when I so seriously needed him. He has always been a loving hubby, just didn't get it. He now does. I agree that education is so important and talking. Not necessarily when you are having a rough day, but when you aren't. Talk about what you were going through.

I'm sorry, my hands and arms are hurting pretty bad right now so I need to take a break.....I hope you are coping better. So many on here are so supportive and it helps to hear their encouragement and words. I wish you the best....Gentle hugs....
 
I really sympathise and empathise with your situation. Having been diagnosed with osteoarthritis, knee surgeries and fibromyalgia, you need a shoulder to cry on not a miniaturized cold war. I would like to advise you to not allow your happiness to be subject to circumstances. Avoid the tendency to assume victim mentality which will likely sap your emotional energy. Having undergone all this, you are a winner. One effective remedy for fibromyalgia is massage therapy around the aching joints with a tropical anti-inflammatory agent. Family members can participate in this massage to better connect with your situation.
 
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