Thanks mischelle for sharing what you go through. And how amazing that you saw a commercial and just knew that was what you had! I believe that was a God send for you. Not knowing can be so scary.
It sounds like you have a bad case. I am really glad though that the vitamin D has helped with the IBS. It must have been too much on top of everything else. I hope when it gets so bad you can't stand it, you are able to rest, use a heating pad, massage from your girls, or what ever else may help. Sometimes i make myself go out and walk even for 1 or 2 blocks,or just get up and move around the house some. but I know... I know there are some days we just have to allow our bodies to rest. Have you been able to ask for something for pain besides the Savella? Tramadol or something similar may really help you.
I think my good days are when the fatigue has let up a little. It is the hardest for me, and also the forgeting, my memory is so bad, and it gets really embaressing sometimes. I have noticed recently that when I forget something, like the most easiest little thing, I feel anxious about it, and stressed. even my DH who is loving and compassionate gives me this odd look, like... are you kidding, you don't remember that!?
Someone tells me something, and the very next day, sometimes the same day, I forget. I wasn't like this till this year. If you know of anything that will help with this let me know.
I pray you and your doctor will be able to find ways that will give you some more relief, especially for the bad flares.
Please keep us posted.
Take care Mischelle
Yet I will rejoice in the Lord, I will be joyful in God my savior. Habakkuk 3:18View Thread
My 2 cents worth. Right now I live in western Md, the humidity gets really high here in the summer. I know it makes me feel worse. I can handle the heat, just not the humidity, it makes my pain worse, and causes my joints to really ache, plus my fingers swell. I always know when the humidity is high cause my rings get really tight.
This Dec me and DH are moving back to my home state of southern Cali. It gets up to 115 more or less for 6 months there! But we are only staying for the winter though, which are perfect, in the 70s, and then moving to Wyoming for summer and fall, it's where all my 4 grown kids wound up because their dad lives there.
Gonna be trying to have the best weather yr. round.
Grapevine108, I live in Md, but just a suggestion. If nothing else, look up local doctors and start calling them. Ask if they know about, understand and treat fibro. Keep trying till you find someone and tell them how seriously you need help now.
My heart goes out to you. You sound very depressed, and need help now. Even though you feel hopeless please know this state of mind can change with the proper help. Are you taking anything to treat your fibro now? If so, it must not be working. You not only need help for your self, but because you have a family who needs you.
15 years is an incredably long time to suffer with this illness without the help you deserve and need.
I have said a prayer for you. I believe God is real, and am a christian. If you haven't yet, please try praying, the bible says God is a very present help in times of trouble, and I know personally this is true. Reach out to him and tell Him what your going thru, ask Him to lead you to the right doctor too. If you call on Him He will help you.
This is the best advice I can offer, and I do care, as many others on this site do as well. Hopefully some of them will come along soon with their suggestions, and encouragement.
Please let us know what happens okay?
I (Grapevine108) can do all things through Christ who strengthens me. Philippians 4:13
Be of good courage, and He shall strengthen your heart, All you who hope in the Lord. Psalm 31:24
I'm here, as are many others, and we understand. I'm glad you reached out to us, it will get better!!
Hey Jim, so sorry to hear what you have had to endure. It sounds like you have one of the more extreme cases of fibro.
I had been wondering if most people's pain was similar, and if I was in the minority for it to feel like the flu. Now I see its not the case. I had read many posts here and on a few other sites where peoples pain was described like cramping, or like something pulling really hard on their muscles, and that tells me everyones pain can be different. The burning you describe sounds terrible, it kinda even sounds like nerve pain. I get it too, but only sometimes, and only in my hands and feet at night. Fatigue is awful, and memory problems so frustrating.
I do believe God allows us to go through hard trials like this for different reasons. One of them being to help us to depend on Him more. Or so we can know what pain and suffering is like so we can help others deal with it. Paul had his thorn in the flesh, and he is such a wonderful example of someone depending on the Lord to see Him through. I love the zeal this man had.
I read some of your posts and know you were once a pastor. I suppose God decided to use you in a different way. I'm sure you are a blessing to many here. God can use us in all different kinds of ways huh? And what a comfort to know, He will never leave us or forsake us.
I will pray for you, and hope things get better soon.
Peace & Joy
For to this you were called, because Christ also suffered for us, leaving us an examlpe, that you should follow His steps.
Elizabeth, how funny you almost used the same screen name, I've had it for about 7 or 8 years, and have never seen any similiar to it. You probably guessed I chose it because of my faith in the Lord. Having this kind of pain is hard to deal with isn't it? When I flare that's exactly what I have to do, lie low, put off any activities I can, and make the best of it.
Katmandulou, It sounds like you have not had fibro for very long if you just had your first flare. I hope the stress gets more manageable for you.
Hope4me2you.. the fatigue hits me pretty hard too. I have found that forcing myself to get up and do at least a little something helps alot, and as so many others have said, pacing is so important. It's so hard sometimes to make myself stop! When it feels like the flu, I really can't do much at all, thats when it's the hardest.
God bless, and hope you all have a nice evening.View Thread
Yes, this happens to me almost every time I start a post. A few times I almost cried from frustration. What I founfd out though, is even when it says " were having problems now, try again later" or something like that; it usually puts your post up anyway.
This is such an interesting topic, so let's explore it some more. I really thought only a few of us with fibro feel like we have the flu.
From the previous post about it, and sorry, I don't remember who started it, but thank you so much, we can see it may be fairly common!
With me I kept having these episodes where I was so achy and 0 energy, just so very fatigued. Felt like the flu, but not with all the usual symptoms. It took about a year of this, maybe more, till I finally told my doctor about it. Now that I look back on it, it's funny how we forget certain things, ( or not ) lol but she told me it sounded like I may have fibro. I was stunned at the time, and honestly thought she was really reaching. I had just started seeing her, and knew it couldn't be fibro.
Even when she did the tender point exam, I did not believe I had enough of a reaction. She told me I reacted to 15 out of 18. I thought, no she's just wrong, since I had read up on it, it should have hurt more than it did. Denial perhaps?
so how about you, do you feel like this all the time, or is it only when you are in a flare? It comes and goes with me, and the duration and severity varies.
Can you all go into a little more detail about how you experience this? Do you have flu like pain all the time? Or off and on? Or is your pain completely different in nature than this?
I think it helps to be reminded we are not alone in what were going through. Thanks in advance for your input.
Just asked the Lord to be with you, and to give this doctor wisdom concerning you. How awesome it is when we do not even know someone except through cyber space, and yet can still lift them up in prayer!
If you abide in Me, and My words abide in you, you shall ask what you desire, and it will be done for you. John 15:7View Thread
I'm so sorry to hear your pain is getting worse. Maybe your doctor needs to up the Savella some?
I was also diagnosed by my primary care doctor, and she told me she thought it was fibro the first time I told her all the symptoms I was experiencing, and she did the the tender point exam. After many tests to rule out all the other possibilities she gave me the official diagnosis.
Sounds like you have a good doctor, which is so important, I'm really glad for you.
I did forget to mention to you the supplements I take, which I believe help some also. I take 2,000 ius of vitamin D, magnesium, and MSM (for my arthritic joints) and 600 mgs calcium 2x a day. A nurse practicioner put me on calcium about 20 years ago, he told me it's so important for women to start on it when they are young to help prevent Osteoporosis when you get older. I have taken it diligently ever since because my mom had the Osteo. I think it was really good caring advice from him. I moved away from there and really miss him, he was just as good as a doctor to me. He was a christian too, it was really obvious, but not in an overbearing way at all. Just genuinely very caring for each of his patients.
As far as the meds helping... I think they help quite a bit, and I know if I did not have the Tramadol, the pain would be so much worse, percentage wise I would say it helps about 50 to 60 percent, which makes a huge difference! The Xanax and Flexeril help with sleeping, I still wake up several times a night but am usually able to get back to sleep pretty quickly. I'm just so grateful for these meds, without them it would be so difficult to do even the most basic things, like taking a shower for instance. Right now I am wiped out just because today is church day, my hubby and I leave at 9 get home around 1 and I have to take a nap right after lunch. Even after a long nap, I'm exhausted. One thing about the Tramadol if you start taking it; I cannot take a nap if it's still in my system from taking it in the morning. And so wait and take it afterward, this is probably why I feel so awful when I first wake up. And yes this does show I am dependent on it, however I'm fine with it, cause I know how much it helps improve my quality of life.
I too have known, and still do know people, some who are closely related to me who have serious addiction problems. I had to distance myself from them, it was self preservation, I get the feeling you know exactly what I'm talking about. They can wreak havoc in every persons life that they know. I stay away, and still pray for them because there is always hope.
My biggest challenges are the fatigue, I deal with it every day, and have to be careful to take breaks alot. Next is the brain fog. It is so maddening at times, I forget so many things that use to be so easy to remember. I try to have a sense of humor about it, sometimes I can't help but laugh at myself, and it helps to try and accept the things we cannot change. I write alot of stuff down, and it helps some. It is bad though, and I know it would be so difficult to work any more with it, and all the other symptoms too. I just recently applied for disability. I know it will be a slow process, but am ready for the battle. It was hard to come to the conclusion I can't work any more. I am a young 54 year old!!
I really want to encourage you Mischelle to talk to your doctor about everything your concerned about, and it may take some trial and error, but you will find what works best for you, with your doctors help. There is light at the end of this tunnel.
Keep us posted, I will be looking forward to reading about how you are coming along.
Take care, and God bless
Cast all your cares on Him, for He cares for you. 1 Peter 5:7View Thread