Fibro and Chronic Fatigue Support Group

Hi im new here. Im feeling very alone right now so i thought about joining a group. My fibro is getting so bad i feel like i need a wheel chair to go out anywhere. I cry alot and my husband tries to support me but i just feel like I cant take it anymore.

Anyways, i just didnt know it was possible for a body to hurt this much. I know im whining but i just need to vent to someone. Im going through alot right now and I know it is causing the exacerbation of my symptoms, but i feel very helpless even so. if theres anyone out there that has felt this way i would love to hear from you. I have never felt so alone in my entire life.

Hello I've been there and I know it can be hard.Are you on any meds to manage the fibro? a good doctor can go a long way to helping you manage the condition.It is always a battle but hang in there it will get better at times.There are a lot of caring and knowledgable people here.hope you get to feling better soon.

Hi Kamien, welcome to the forum. You're not whining, vent away here any time you need to. It's something I certainly need to be able to do in order to cope. How long have you been diagnosed? It is very hard, both dealing with the reality of the diagnosis and if you find yourself getting worse, and it's very normal to find it difficult to cope with being in pain all the time, I'd worried about anyone who didn't. As Kali says, what help are you getting? It sounds like you need to be urgently talking to your GP about some better treatment, pain relief and any options like counselling and support that might help you cope with the changes you're dealing with and the emotional cost of being in so much pain.

In the immediate short term, if you have a look on the Medicines and Treatments section of the forum, Flufflyluggage has some great suggestions up about aromatherapy and relaxation - I know when you're really in pain that's like a drop in the ocean, but perception of pain can be the difference between coping and getting panicky, and finding any small things that make you feel calmer and more relaxed can help you feel a little more resiliant.

Hugs and warm thoughts to you hon

Post edited by: Rainmist, at: 07/03/2010 10:10 AM

Welcome to the forum Kamiem. So sorry to hear what a tough time you're having. I think every member here knows exactly what you're talking about. You are far from ALONE. Please come to vent, ask questions, & share your story.

About 9 months after developing fm, I thought I would spend the rest of my life on the porch in a rocking chair and I was 35. I found a great doctor by attending a pain support group and getting her name by word-of-mouth. I have had fm for 20 yrs now and in that time I've learned many techniques for coping.

My 1st weapon in a pain cycle is warm, moist heat in 20-minute cycles. That can be warm showers, baths, heating pad, or moist towels heated in the microwave. If heat doesn't work, I go to ice packs on the worst area, just to numb the pain away.

Additional methods I use are: Rx & OTC pain relievers, professional physical therapy and counseling, gentle aquatics, & techniques in gentle stretching, relaxation & distraction, aromatherapy, breathing, etc.

This forum has great members who are knowledgeable & experienced. And your fm doc should have those qualities, too. He/she also needs to be empathetic about your symptoms. Your fm doc is your No. 1 friend in fighting fibro, so you want to find a great one that feels right. A good fm doc won't doubt or disbelieve you. And he will have options for therapy and WANT you to learn about fm.

We are here anytime you need us, so please come back often and share your experiences. When pain gets bad, we all need to feel heard and we WILL UNDERSTAND. We will not doubt you like some docs do, we know what it's like. I'm sending positive thoughts and prayers. Gentle hugs. Karen

Kaimen,know that you are not alone.I have had the same feelings. It is really strange to understand unless you have been there but you can be in a room full of people and feel so alone because you feel misunderstood ..Unless someone has lived with chronic pain and all the other symptoms that we suffer from day to day they will never fully understand. My husband tries and is very understanding and supporting, but I imagine it is just as frustrating for him knowing that I am sick and there is nothing he can do about it except be there for me. The world is so focused on what they see..and for the most part we look normal. I am also a newcomer to this group and I think it is great there is a place that we can go and air our thoughts and opinions to find and get help. There are some great forums about staying positive among other helpful advise from suffers just like us. I feel hopeless at times and I need reassurance that I am not alone..Also know that knowlege is helpful..GOOGlE Fibromalgia and learn what you can, and offer that information to your husband.There are support groups for loved ones trying to understand fibromyalgia to. Youtube also has some videos about fibromyalgia and people tell their story on there. You are not alone, there are alot more out there that are willing to make a difference.Willing to share their stories and willing to offer support...God BLess you friend

Hi Kaimen, I too am new here and feel just as you do. But after reading some posts I know that we are not alone!

I am unable to take prescription drugs for my symptoms because of a chemical sensitivity that I have. My doctor has been great in working with me to find alternative methods. I manage with my diet, supplements, aromatherapy, meditation, yoga, and some other things. My heating pad is my very best friend most days. And I take a LOT of hot showers or soak in a hot tub with lavendar oil. It really does help.

Finding out that i cannot take the mediations without being even more sick was hard. I thought that I would forever be in pain. But over time I have found things that help. That's not to say that I don't still have pain everyday and some days just put me into tears. I feel alone because I have no family and really no friends here. My husband is a great support but he works full time so I find myself alone a lot.

It's been tough but I'm hoping this board will help and new friends. I wish you the best on your journey and I hope that you can find some remedies to help out. If you ever would like to talk please feel free to send me a private message.

Praying for better days for all of us. Blessings,

Belinda

Kamien,

You're absolutely not whining. Never use that word. It's ok to talk about pain here. We've all experienced it and know that it can be very bad sometimes. struggling to feel in control when your body is acting out is a tough one for anyone to handle.

I don't know what meds you're on if any, and I don't subscribe or promote any particular med, but I do know that I've heard most fibros average 8 meds. There are also lots of proactive things you can do, as fluffy suggests, that help manage symptoms. I go to a holistic doc that treats my pain, a rheumy who gives me his opinions on newest research and meds, I also do warm water stretches and exercises, and lastly I meditate and pray.

Researchers are so close, and once they understand the mechanisms of this condition, I believe better treatments will become available. Hang in there, you're not alone.

Try to sleep, there's a lot to be said for the healing powers of it. take care and let us know how you are doing. hugs hedap

Hey Kamien,

Welcome to the forum. I think it's pretty clear you aren't alone by now! But I know it's hard to feel that way, like others have said, when you don't feel like you have a support system. So, think of us as your support system. Don't feel like you're a pain in the butt! You're here because you need us. Call it fate or whatever you want, but you need us, and even more, we'll need you one day. It's a great relationship that we develop once we all get to know each other, and even while we're getting to know each other!

It's soooo important to give yourself time to vent. And there are so many things you can do to cope with the pain. But I do think you aren't getting the appropriate treatment if your pain levels are really that high. You shouldn't feel that way. That means you need to talk to your doctor. In the meantime, however, there are posts and articles on how to pace yourself, dealing with your diagnosis, natural remedies that might help, and coping strategies, plus information about FMS.

I hope you'll find this useful, and I also hope you'll update us on how you're doing.

Hugs,

jen