PLEASE PLEASE make a note of this.... I'm getting pretty darn angry & I know I speak for thousands of others like me who live in this Bubble Life. I feel so frustrated right now because so many of you just don't get it & don't try to understand. I feel as though you over look us because we look so normal & we don't look sick. You can't even imagine the H we live every day. You can't imagine the energy it takes to just get our day started. When I wake up I'm surprised that I'm alive because every night before I go to bed I'm in so much pain that I don't think I'm gonna live through it. There has not been a pill, therapy, injection that has taken the pain away.Nothing can touch it, it's undescribable. The entire day is spent trying to survive. It's exhausting!! Too much, too many things are involved in this Illness & it needs to be studied more extensively. It's real....this illness is as real as cancer, but it's so overlooked. I will continue to be patient as you research to find a cure. Until then I want you to know that what you describe as PAIN is no where near PAIN. In fact it needs to be named something else, but PAIN is not the word for this MONSTER. So until you find something to at least make us as close to normal as possible find a new word for something far greater than PAIN. It just don't describe what we feel.....it's far worse.
Wow. Powerful thoughts. I loved how you said that pain isn't the right word, there needs to be something else to describe this monster. Yeah, you're right on the money, Char.
Besides the pain, there is fog. And fatigue.
But what I identified the most with in your letter was the fear of dying of the pain and exhaustion, how it feels like a reality. I remember that on weekends, i'd just lie in one place, not having the energy to even get up. I wanted to look for a less exhausting job physically but I couldn't do that either. I honestly thought that I'd die from the extreme exhaustion and I stopped caring - because it took too much energy to care! On alternate weekends, that turned into every weekend, I also drove up to Portland, Maine from about the Rhode Island border of Massachusetts, in order to visit my sister. I have no idea how I did it. I can't imagine being that person any more.
Sorry, I got side-tracked there. But I'm glad you brought this up as all of that's been bothering me for a long time. As you know, it's extraordinarily upsetting to feel like you'll die from the pain - when you finally have enough emotional ability to feel again!
It concerns me when you say that you have nothing to help with the pain. i use Lyrica - it helps enough so I'm not in agonizing pain, just residual pain. Has your doctor not been able to find something that'll work for you? Have you been tested for auto-immune illnesses as well? They can mimic fibro - or even co-exist with it - and could be immune to Lyrica and other fibro meds. It seems to me that your most important task is to get the medical help that'll afford you some pain reduction. You might want to do a family history and figure out if you had other family members with auto-immune diseases, such as Parkinson's, Psoriatic Arthritis, Rheumatoid Arthritis, etc., or any kind of connective tissue disease. If so, you might consider whether or not you might be experiencing something similar to they experienced.
I hope that something in that paragraph i just mentioned helps to bring more info your way, so you can get better treatment.
Hugs and hopes, Char!
Petunia
This is very powerful. I can not get my head around the fact we can send people to the moon and we can not treat Fibromyalgia. I was one of the people who thought, LOOK AT THEM THEY DON'T LOOK IN PAIN AND THEY SURE DON'T LOOK SICK. Well now I have to walk in the shoes of a person with fibromyalgia and I have to ask God to forgive me. It is still hard for me to have this diagnosis. I was treated for 2 years with RA drugs and they did a real number on me. I guess they won't find a cure because they still have to rule out every other diagnosis. Until Doctors start diagnosing Fibromyalgia as a primary diagnosis and not as a ruled out so here you go diagnosis then its going to be an up hill battle. We must keep our hope that they will find something to help. I also agree with the pain scale. It like comparing apples and oranges. Pain those who don't have it don't know pain. I think though that our pain is so much worse because of our fatigue and its on going so it wears us down until it is completely out of control. I think of pain as a physical being something I battle every minute of each day. My mom always says God won't put more on you than you can handle so I try to remember that and just keep on keeping on.
Amen!
Phenomenal words! You are absolutely correct! Some days and nights my body is in so much pain that there are no words to describe it Monster would not be justice. My body is so sensitive at times that every move and any noise simply hurts me. I can not even touch myself without hurting. However, what adds to that horrific pain is when you are treated disrespectfully by doctors, lawyers and insurance companies and they just let your words fall on deaf ears and ignore you. What is more insulting than to have your illness treated as a phantom, mystery illness by the medical community and not taken as seriously as Cancer. Not researched like other medical diseases even though they know millions of people are suffering from this disease.
I am so sorry this has been a nightmare for you. Drugs are not the answer, at least not alone. Sometimes therapy, meditation, relaxation, works for some people. Mine was acupuncture. The therapist is no longer in this area and his fees were reasonable. Key is lowering stress.... that's a tough one. I can always tell when the fibro might be starting up again because I get pain in my elbows and arms. Initially I had pain everywhere and was tired all the time. Still take naps and try not to overdo or get up too early. I never do much early in am. I have good and bad days. I am on SSDI. I don't know where u live, but try to go to a teaching hospital and look for drs who deal with fibromyalgia and have a good success rate. This is a lifelong thing, Char, but you can beat it! I have other physical and psychological conditions too. I know fibro can come back full force anytime, but you can give the monster a kick in the butt once in awhile! Lorraine
Pet, Thanx for ur concern. I'm not new to this horrific illness, I was DX'd 24yrs ago & had numerous symtoms & illnesses many years prior. My initial DX was FM/CMP & IBS. It branched out to type2 Diabetes, Osteoarthritis,Neuropathy, Rheumatoid Arthritis, Osteoporosis, Sleep Apnea, Plantar Facsitis,Bone Spurs, Asthma. Chemical Sensitivity.Allergies to foods, dyes, materials, water & the air. Sad to say I'm a. freaking mess. I was allergic to everything as a kid & my siblings would get mad @ me because I was allergic to dish liquid & didn't have to wash dishes. My bath soap was made @ a pharmacy. It's like my body attacks itself or something. It's crazy. I dont like to really tell ppl all about this because it sounds so crazy, but I've live it for years.
I have the best doctors who work w/me very closely allow me anything I need for comfort. My health care team comes to my house. I'm spoiled rotten by my team. Together we've been fighting this for 24yrs. Plus the biggest voice concerning my care is me....I give the final yes or no. My insurance also works w/us. This has been a long journey.. I have no problem getting help or anything. Just screaming for the NATION to get on board, Take us seriously & Help my FM Sisters/ Brothers......this is Real & it's beyond what they simply call PAIN & when it's spoke about they make it sound as though its simple headache type pain. THEY DON'T GET IT!! Meds only mask the pain, we need a cure & a cause. There's neither. That's why I'm screaming. WHY?? It hurts me so bad when I read the stories on here with ppl not finding the proper care & the way they're being treated.
YES, this illness runs in my family.... found this out a few yrs ago & it's generations.{long story} Can't take Lyrica. I take & tolerate Neurontin. The only reason I agreed to take it was my burning spine & sensation of bees stinging my legs & feet. [[[[hugs]]]]]
U r so rite Jackiem God help us,,,,,((hugs))
Me too Tracy, I've been with the same health team thru out my 24 yr care we work well together. My biggest cry is for those I read about on this site who cant seem to find a Doc who care or believe in thisHurts my heart... I cry for CURE~ ((HUGS))
IKR Jackie51 ((hugs))
((((HUGS)))) thanx Leslie~
aaah Img2354, I'm good,,,,,,just need to vent & shout out for my FMfmily. I'm a long time sufferer & I.ve done it all, tried it all & I'm still here fighting,We will beat this thing. I been w/the same docs for 24 yrs who has been awesome for me.& keep up with FM & related conditions. Thanx ((hugs))
SWEET!! FM RaTTeLD (((HUGS)))
...have a great nite sleep FM Ratteld ((hugs))