Our stories are important. Will you share yours?

General
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Ben's Friends is made possible by generous donors who help pay for the costs of maintaining our network. They share with us, and we would like to share your story with them. Post what Ben's Friends has meant to you!

In your post, we'd love to hear a bit about your Ben's Friends story: how you were welcomed, what the support of your peers did for you, how Ben's Friends has made a difference in your life and your family's life, or how being here has changed how you cope with your rare disease. Or anything else you can think of!

It doesn’t have to be long. And if you’d rather share your story privately, send a PM to me, or to ModSupport (find them in the members section.) Would you rather do a video testimonial? Even better! Send a PM to ModSupport. They will tell you the easiest way to do one.

Your turn! What has Ben’s Friends meant to you?

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Hello,

I joined Ben's friends after my Fibro diagnosis, ( which took about a year, so I found out a bit about it during that time). I was feeling down and a bit in despair, but the welcome was so warm and so positive it helped me hugely! I suppose one of the things that struck me at first were the huge number of meds, painkillers some people were taking, and they still seemed to be in a lot of pain. So that made me realise I didn't want to go down that route, thinking pain meds are the only answer - they're not! And I have stuck to that! I have listened to how others manage, realised that one size doesn't fit all. Just knowing there's a place to go, where people understand, has helped me on my journey towards acceptance. Now it makes me feel good to think I might be able to give that little bit of support or reassurance to someone, as I was given on Ben's Friends.

Many thanks, Anne

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Hello!

Maybe someone can help me. I have been disabled since 1999 by fibro and live on Disability and it is not enough. I can not work because my student loans are being forgiven due to Disability for 2 years. I am not able to survive on what I get monthly. Does anyone have any advice on what I could do? Thanks!

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AnneV said:

Hello,

I joined Ben's friends after my Fibro diagnosis, ( which took about a year, so I found out a bit about it during that time). I was feeling down and a bit in despair, but the welcome was so warm and so positive it helped me hugely! I suppose one of the things that struck me at first were the huge number of meds, painkillers some people were taking, and they still seemed to be in a lot of pain. So that made me realise I didn't want to go down that route, thinking pain meds are the only answer - they're not! And I have stuck to that! I have listened to how others manage, realised that one size doesn't fit all. Just knowing there's a place to go, where people understand, has helped me on my journey towards acceptance. Now it makes me feel good to think I might be able to give that little bit of support or reassurance to someone, as I was given on Ben's Friends.

Many thanks, Anne

Hi Anne,

Be careful of pain killers! They don't warn you that they are addictive or that you get used to them and need stronger and stronger medicine after time passes. I am now on Suboxone after being on EVERY pain killer known to man. Just wanted to warn you about them since no one warned me.

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Hi, Sheila. I am sorry to hear of your financial difficulties. Check out this member’s discussion for some great tips and links on assistance-

http://forum.livingwithfibro.org/forum/topics/money?xg_source=activity

You may also want to consider posting your own discussion for others to share experiences and offer support.

Hugs,

Laurie





SheilaErin said:

Hello!

Maybe someone can help me. I have been disabled since 1999 by fibro and live on Disability and it is not enough. I can not work because my student loans are being forgiven due to Disability for 2 years. I am not able to survive on what I get monthly. Does anyone have any advice on what I could do? Thanks!

6

Hi, I'm a 61yr. old female vet, Viet Nam era, and with fibromyalgia, depression, and PTSD, I'm having a hard time finding medical help for my fibromyalgia. The meds out there for fibro treatment can cause depression and suicidal thoughts. I have opiods for pain but they don't work too well. And the doctors are concerned about the effects of the fibro meds causing a worsening of my depression and PTSD. But the pain from the fibromyalgia is at times overwhelming and debilitating. Any suggestions as to how to ease the fibromyalgia pain?

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Donna,

Let me warn you about pain killers! They are highly addictive and what they don't warn you is that you get used to a certain level and then need something stronger! Pretty soon you run out of options like I did and am now on Suboxone, which is for addction. Taking a hot epsom salts bath helps. Exercise, like walking or swimming helps. I have PTSD too. From childhood trauma, so I know what you are talking about. Finding a simple hobby helps, like I do latch hook rugs in my spare time. Resting a lot helps. Something that really really helps my pain is eating red meat, like hamburger. But it depends on your blood type. Stay away from anything white: like white sugar, white flour, white bread. These make your pain worse. I hope this helps. Good luck to you and let me know if you have any other questions. Erin

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Hello, Members. Our apologies for any confusion. We’d like to preserve discussion here for the topic of sharing personal testimonies regarding the impact of Ben’s Friends communities on your lives. Please start a discussion in any of our other categories if you’d like to discuss symptoms or wish to simply introduce yourselves. Thank you for understanding.

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Thank you for your service to this great country.

I wish I had more to offer to you than a thank you for your duty. (I am a Gulf War Vet) I do understand how overwhelming the pain an be with fibro...as well as many others here. Right now I am going thru a terrible flare up from an old injury. For sure, I don't think I have had this much pain ever!

It took a while for me to find a doctor that would work with me and my Fibro. I found a GP that gave me a reference to a Ortho doc who sent me to a Rheumatologist. It was a crazy way to find the right doctor, but sometimes it takes crazy to find help!

Keep advocating for yourself until you find what you need in a doctor. Now that Fibromyalgia is a "real" disorder/disease in the medical coding, it will be hard for some doctors to ignore their new patients!

Again I Thank You for your duty. I looked up to women like you when I was early in my career. Y'all are some amazing people!! Take care and I wish you a gentle day!


Donna Hankins said:

Hi, I'm a 61yr. old female vet, Viet Nam era, and with fibromyalgia, depression, and PTSD, I'm having a hard time finding medical help for my fibromyalgia. The meds out there for fibro treatment can cause depression and suicidal thoughts. I have opiods for pain but they don't work too well. And the doctors are concerned about the effects of the fibro meds causing a worsening of my depression and PTSD. But the pain from the fibromyalgia is at times overwhelming and debilitating. Any suggestions as to how to ease the fibromyalgia pain?

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Hello!

This place has been a source of information that was valuable to me at different times and different pain levels.

Thank you all for sharing so much here!

It is true, I am more of a "lurker", reading and digesting all that has been written and not participating in the conversations.

Why? One reason is that I am a bit shy. The other reason is y'all are amazing people! What some of you endure in a day makes me look like such a pansy, I shy away from sharing my trials and gentle days.

The Basics:

The diagnosis of Fibro came in 2002. This was after a crazy five years of looking for doctors to treat my symptoms. With all the reading I have done (advice from a doctor to read "everything" about FMS) I am sure that I have had Fibro symptoms since puberty or when I found out I had Mitral Valve Prolapse and its syndrome. Sometimes I believe that Fibromyalgia is a part of the MVPS, since both of them are related to the CNS.

After a long bout of being symptomatic, I finally found a GP that knew about Fibromyalgia and he did his best to help in treating my symptoms, but no opioids. House rules. When the pain became too much to deal with, I had to sit myself down and make some tough decisions.

When I first realized that something weird was going on in my body (pre-2002), I tried to treat the pain, fatigue and other symptoms with natural, holistic remedies and recipes. I DID NOT like to take pharmaceuticals!! Not an aspirin or round of antibiotics!!

The truth was staring me in the face that what-ever was wrong with me was bigger than holistic recipes could handle. (Imagine that major disappointment and anger) .I had been nearly bed ridden for almost 6 months. My life was falling away as sand would between my fingers!

My wonderful husband and I were still in the early years of our marriage, and all our plans had been put aside. That made me so mad and sad. So, while I was making the hard decisions to get something done with this stupid illness, I decided that I would take the things I had learned reading other Fibro patients experiences and set forth! My GP referred me to a Ortho doctor about my neck pain. During that appointment the doctor seemed to have a light bulb go off above his head and referred me to the Rheumatologist I still see today! Whew! It was a crazy way to find out I had Fibro, but sometimes it takes crazy to get something done.

Sometimes I am very grateful that I have Fibromyalgia. Afraid that sounds a bit stupid, but it is true. There have been some wonderful things that have come about because Fibromyalgia slowed my life down to a crawl. There have been blessings and wonderful people that I have met since my life slowed down! Do not know if I would of seen the good that I have if I was still living that fast paced life. This includes a dog and a few cats that I could not have before when my life was in a hurry. Hope this makes sense.

I apologize for not participating in conversations here. I hope you understand. I have visited this wonderful place, learned from everyone who posts. Y'all saved me from unnecessary tests, helped me ask for proper tests, medicines and all those tips and tricks you talk about to deal with the pain, fatigue, etc. I owe y'all a giant THANK YOU!

Take care and I wish all of you a gentle day.

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I have been a member of Ben's Friends for years. They are always there to support me. Any discussion I have posted I have gotten a lot of support and responses. It is very important to know YOU ARE NOT ALONE. Help is here if you just reach out for it. I would like to thank Ben's Friends for being there for me and my Fibromyalgia, which no one ever hear's of. I have had it since 1999 and been on a total roller coaster with it. It does not go away and neither does Ben's Friends. They are always there to support me. Thank You, Sheila Erin

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I found Ben's friends through making a custom quilt for a lady the has Charias Malformation. Be thankful you do not suffer from this.

My story started 32 years ago(1983) while in the Air Force. Not the right place to try and convince Dr.'s; Commander etc. of pain when there is nothing that shows on x-rays, mri's, cat scans just my blood pressure would be elevated and one Dr. did admit I did look like I was in pain, So after a couple of trips to the Dr. I was referred, rather SENT to the phyic ward since it had to be in my head. After 3 days. I was sent home with nothing. I kept my mouth shut after that i suffered in silence for the rest of my enlistment (3 years). It just progressed to the point I couldn't sleep, follow conversations, which in turn lead to many problems with work. Then my second daughter was born and had sever respiratory problems for 5 years. I walked the floors at night from 3 months old until almost 6 years old so she could sleep in an up fashion. She weighted 28 pounds when she started kindergarten. But we found a Dr. who finally got the chronic infection out of her sines. Im very thankful for that. this only made things worse. During that time I divorced my worthless, alcoholic, manic husband, I'm very thankful to the other woman that I found out about. Still had no diagnosis. In 2000 I met my current husband. In 2001 we planned to marry in may. In march my maid of honor (she set us up on a blind date) and I were making all the flower arrangements while our guys were on National Guard weekend. I could hardly move after so many hours on the floor. In the morning I couldn't get out of bed the pain was in my bones. the Dr's thought I might have Lupus. But I didn't test Positive for RA. But it turned out after 11 days in bed that I had drug induced Hepatitis. I had been on the drug Accutane for 15 months with no blood work done. My GP Dr thought I might have this thing called FMS. so referred me to a Rheumatologist finally in 2002 I got the help I needed. But there is so much else wrong with me. I have "multiple Neurological Disorders". I am on 11 perscription.

But I finally found a great pain management program through Washington University Hospital in St. Louis MO. I am so thankful for this program. It changed how I deal with the chronic pain and to get through a day.

I also found that my insurance offers a nurse advocate and was a go between from insurance & Doctors. I am very thankful for Melissa she is a Blessing one of those Angels that God has on earth,

Then there is my husband, Keith is a wonder beyond compare! He is my rock, my ship in the sea. My best friend. He is the world to me. There is none better. I have days that I cannot get out of bed with out him lifting me out. (I'm thankful I lost 147 pounds so he can). I wake him up when I have charlie horses around my rib cage and cant breath. He will rub my meds into me until the muscle loosen. He'll come home after a 12 hour shift and will cook if i'm having a bad day. I don't think I can ever in words be able to express how thankful I am for the blessing of him.

Through Ben's Friend I found a lady that lives only 20 minutes away and we get together to compare notes, ideas, She is someone that is in the same pain boat as me. She is a wonderful blessing. Thanks Deb

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Try to find a Pain Management Doctor they deal with A LOT of FMS they have done wonders for me



denalees said:

Thank you for your service to this great country.

I wish I had more to offer to you than a thank you for your duty. (I am a Gulf War Vet) I do understand how overwhelming the pain an be with fibro...as well as many others here. Right now I am going thru a terrible flare up from an old injury. For sure, I don't think I have had this much pain ever!

It took a while for me to find a doctor that would work with me and my Fibro. I found a GP that gave me a reference to a Ortho doc who sent me to a Rheumatologist. It was a crazy way to find the right doctor, but sometimes it takes crazy to find help!

Keep advocating for yourself until you find what you need in a doctor. Now that Fibromyalgia is a "real" disorder/disease in the medical coding, it will be hard for some doctors to ignore their new patients!

Again I Thank You for your duty. I looked up to women like you when I was early in my career. Y'all are some amazing people!! Take care and I wish you a gentle day!


Donna Hankins said:

Hi, I'm a 61yr. old female vet, Viet Nam era, and with fibromyalgia, depression, and PTSD, I'm having a hard time finding medical help for my fibromyalgia. The meds out there for fibro treatment can cause depression and suicidal thoughts. I have opiods for pain but they don't work too well. And the doctors are concerned about the effects of the fibro meds causing a worsening of my depression and PTSD. But the pain from the fibromyalgia is at times overwhelming and debilitating. Any suggestions as to how to ease the fibromyalgia pain?