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Hope4all

Active member
Joined
Oct 31, 2016
Messages
52
Reason
DX FIBRO
Diagnosis
01/2006
Country
US
State
Michigan
Hi! I want to communicate with someone who understands fibromyalgia and chronic illness. I have all the diseases that go along with it or are related to it, such as interstitial cystitis. I have been chronically ill for about twenty years. While I have accepted my limitations, one thing I really struggle with still is healthy people may try to help and even succeed at being quite helpful with physical tasks, but they just don't understand what it is to have a painful, exhausting illness 24/7. I feel lonely. It is hard to not have someone who understands to talk to, so that's why I joined. Also to see if I could help others. It is so frustrating to set simple goals for myself and then be so distracted by ongoing pain and fatigue that I forget them. I used to be a straight A student and athlete and musician, but it is so hard to do these things I am failing now at them. My family (husband and 4 kids) are really important me, so I try to prioritize and focus on them with what strength I do have left. It is hard to sacrifice for others acting in pain or fatigue and not be appreciated, because what I did wasn't as hard for a healthy person. I get migraines and I want to listen to my daughter play the piano or my other daughter swim but the slightest loudness hurts my ears and triggers migraines. I also have a tremor and it makes my hands and feet shake so that makes daily tasks harder. I am afraid to ask the doctor for more medicine sometimes because doctors are so hesitant to prescribe pain meds for fear of being seen as a 'pill mill." Other people abuse drugs so those of us who really need them suffer without. I have a really nice doctor right now, and I worry about her getting frustrated that she can't cure me. Anyway, if someone understands any of this please respond. Thank you.
 

Heavenjumper

Active member
Joined
Sep 26, 2016
Messages
52
Reason
DX FIBRO
Diagnosis
08/2016
Country
US
State
AL
I understand what you're dealing with. I was only diagnosed a few months ago, but it's hit my life hard and fast. The migraines can be debilitating and interfere with being able to enjoy simple parts of life. Constant pain and fatigue are also very hard to cope with, especially when you're so used to an active lifestyle. My boyfriend is wonderful in dealing with my limits with me, but he still can't fully understand all that I feel and go through...no one can that doesn't experience it. This forum has helped me to cope and have people to talk to that understand, so I'm sure it will help you as well.
 

Hope4all

Active member
Joined
Oct 31, 2016
Messages
52
Reason
DX FIBRO
Diagnosis
01/2006
Country
US
State
Michigan
Dear heaven jumper. Thank you for responding to my message! I cried with relief when I read it. I didn't realize how
Isolated I
Felt before reading it! I am so thankful to have someone to communicate with. I have to go for the moment and this formatting is
Messed up.
For
 

Eyesup

Senior member
Joined
Dec 11, 2015
Messages
376
Reason
DX FIBRO
Diagnosis
12/2015
Country
US
State
Florida
Good gosh sometimes I think the outside world would think the same person narrated most the newbie posts! You are so not alone. I think maybe the fact that the ones of us that get crushing pain consistently withdraw from society means we become even more isolated with this disease as the outside world never see's the disease at its worst.
I doubt anyone can fully understand our pains. The good news is they don't have to In order to understand our plights. You don't see breast cancer until treatments cause visible signs yet people still understand its pain. Education is key, unfortunately even my husband who is kind and supportive really hasn't done much research on fibromyalgia I think he read enough from a third party to understand it can be quite debilitating and that was all he needed to know. I don't wish for him or any other loved one to feel this kind of hurt (well, maybe for a day!) .
I think guilt of not being productive and being a burden at times bothered me the most after I got over my depression of not being able to accomplish ANYTHING I wanted to. I still mourn for the old me from time to time, and time does help ease that pain but truthfully hope is the key for me. I accept where I am today but I never give up hope that I will find a way to improve more and more. I never stop looking for ways to get better. If it takes one small improvement at a time they will eventually add together to be a big improvement. And I never give up hope that one day a complete cure will come along.
I did nothing but survive each and every day all of last winter. Stuck on a pile of pillows and some days unable to get off the bathroom throne by myself. By March I was functioning on gabapentin, I added a slew of supplements and protocols and was able to rejoin the land of the living if only for short periods at a time. I did great all summer and I guess after being in so much pain and not able to do, I am now happy with my limitations even if not up to par, being able to clean my house even causes a jump for joy.
So hang in there, find the things that work for you...the right medications, supplements, massages, chiropractor, acupuncture and mostly a doctor.
At least one that is knollegable of fibro, the pains and condition it causes and treatment options that might work for you.
I'm sorry this is so long winded, but it important you both know your not alone.
Hope is mighty powerful and one of the few things fibro can't steel from you unless you let it. I know from my own exsperiances that some days it is hard to find, and that's ok, allow yourself a pitty party from time to time but don't let it rob you of hope.
 

Heavenjumper

Active member
Joined
Sep 26, 2016
Messages
52
Reason
DX FIBRO
Diagnosis
08/2016
Country
US
State
AL
Hope4all, I'm glad my message could be a bright spot in your day. I understand feeling isolated all too well lately and this forum does help ease that tremendously. I think being able to communicate with others who truly understand what we deal with is a great help in coping with the daily frustrations of fibro.

Eyesup, your words about hope made me tear up reading them! As bad as I've felt lately, I fear how bad it will get with winter coming up. Holding onto hope that things will even out and possibly even get a little better will be beyond helpful in getting through this first winter with more limits than I'm used to. I think my boyfriend has a similar understanding of this disease as your husband and I'm with you on not wishing anyone to feel this pain. I've been realizing the importance of supportive family more and more lately. This group has already helped me deal with my new situation much better than I could have done on my own, and I can't express how much I appreciate that.
 

Annett

New member
Joined
Nov 11, 2016
Messages
2
Reason
Practioner
Diagnosis
11/1990
Country
CA
State
British Columbia
I had a lot of the symptoms that you have for about 15 years. I wanted to die at the time. I had chronic fatigue, fever, exhaustion etc almost all of the time. I finally figured out how to heal myself. It was a combination of getting to the root cause of the emotions and trauma from the past & supporting the physical body to heal itself. The body is just expressing what we have going on inside. Getting off of sugar, wheat and junk food and taking colloidal silver to clear candida and I was like a new person. The physical part was important but almost more important was the emotional part helping me to let go of it all. I had to stop identifying with being sick. I got off all anti depressants, etc and don't have any symptoms anymore. Now that I'm free of it I help other people do the same. There is a way out, let me know if I can help. Annett
 

Hope4all

Active member
Joined
Oct 31, 2016
Messages
52
Reason
DX FIBRO
Diagnosis
01/2006
Country
US
State
Michigan
Thank you for the sympathy and info. I know I have severe emotional issues. My kids and I are abuse survivors and I have been rejected by my parents and siblings because they believe our abuser. It's because they are abusers, too, and I am trying to stop the cycle. Thankfully, I have a healthy family now with a kind husband. I am really blessed. I wish everyone with this disease had the kind of family I have now. They are really patient and helpful. I have a counselor who is great but it is taking some time to sort out because it was a big trauma. I think I was born sick, though, according to family members. I know that even if working on my emotions doesn't cure my physical disease it will help to reduce stress and have fewer flares. It has really helped to connect with you all. I wish you the very best!
 

Hope4all

Active member
Joined
Oct 31, 2016
Messages
52
Reason
DX FIBRO
Diagnosis
01/2006
Country
US
State
Michigan
I'm sorry you are sick too. I think you're right that others see us only when we are feeling a little better. It does make it seem less severe to some. I even have that problem with the doctor! If I can't drive myself, sometimes I don't go when I am suffering. Thank you for your kind response. I wish you the best!
 

Clara

New member
Joined
Nov 10, 2016
Messages
3
Reason
DX FIBRO
Diagnosis
01/2013
Country
US
State
OR
Hi Hope4all,

Thanks for your post! I totally understand what you are experiencing. I too have so many issues with fibromyalgia, I feel "broken". My husband, whom I've been with for almost 14 years, just doesn't understand. He so often says things like "don't use fibromyalgia as an excuse to not put things away ore clean up." I feel like he doesn't get how exhausted I am, how chronic pain in multiple parts of the body robs my energy so completely. I am doing my best to explain to him what I'm going through, but I feel like he doesn't want to understand it.

When we met, I was hiking 12-20 miles every weekend, cycling almost daily, walking daily, and taking care of an edible yard (and other outdoor activities when possible). We would ride motorcycles and frequently go camping. Also, I was a massage therapist seeing 6-8 clients/day, 5 days a week. I had to give up massage therapy - went back to school and got a Masters in Oriental Medicine and Acupuncture, thinking it would be easier on my body. While it is, I haven't been able to make a living (whole other issue!). I use to be so active, and I do my best to be as active as possible now, but have to be really careful to not over do it.

When I first started talking about my PAIN, people in my life thought it was something that would pass. Then I got the official diagnosis of Fibromyalgia about 4 years ago. Trying to explain this to the people in my life has been so very challenging. Some are compassionate, while others just don't get it. My husband, for example, has never read any information about it.

Knowing what I know about the body and health, I have tried just about every "alternative" treatment there is, and haven't found anything that really helps. So now I'm going through the gamut of pharmaceuticals. Joy joy! NOT. My doctor is compassionate and working with me to find the right medications. But we haven't found the right combo yet.

The point is, I feel very alone a lot of the time. I do have one very dear friend who now understands, as she has been dealing with chronic pain for almost 2 years. I feel like she is the only one I can talk to. With the exception of one other friend, most don't really want hear about what I'm going through. I think it makes them uncomfortable to hear about it, and maybe they feel as helpless as I do?? I honestly feel so alone and helpless sometimes and just cry. I am unable to live my life the way that I want to. Fibromyalgia has robbed me of that... It is so difficult to come to terms of living with a disease that has no cure and one that is so "invisible".

Thanks to everyone else who responded! It is helpful to read the experiences of other people. :)
 
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