Dealing with being crazy

[kateshepard]

So I'm nearing the end of my search for a diagnosis or reason to explain my fibro symptoms. This year has been terrible. It started with an X-ray of my right upper arm...my most painful area, because I couldn't even lift my arm to brush hair/teeth without tearing up in pain. I had weeks of acupuncture via my PCP...no noticeable help. I've seen my rheumatologist 3 or 4 times since diagnosis in Feb this year...all lab work is normal, and all trigger points (and skin in general) are consistently sore. I've been on and off meds, seen two psychiatrists, seen an ENT for ear problems, had a sleep study (prescribed by sleep doctor), EEG (at neurologist's office) and most recently an MRI via a different neurologist. So much blood work. So much anxiety. And so much weakness, fatigue, and pain.

I'm throwing in the towel I guess. Family members think I'm crazy, that it's all "in my head". Why would I want to avoid cuddling with my little 2 year old girl at the end of a long day? (Sometimes cuddles hurt). And why do my arms give out when I'm holding her little 30 lb body? Why do I need to rest my arms while washing my short hair, brushing teeth, etc? Ugh it's really torture feeling this way...not being able to live a full life because of both physical and emotional difficulties.

I guess the point here is that I'm looking for someone (besides my rheumatologist) who believes me and understands this turmoil.

Kate

[Pattinich]

After trying to explain to family and friends what Fibro is about  I gave up and now suggest they look it up on the net. This has worked well and makes it not personal and easier for them to understand.   Now, when I meet someone who will be in my life I always tell them upfront that I have Fibromyalgia and cannot commit to making unalterable arrangements.  Also never make appointments early in the morning as I always feel terrible although this usually straightens out a bit later but may turn into a crash day.  Don't ever feel guilty as you have a chronic and life altering problem that you must accept and know that there is help out there.  Even your little one will understand that Mommy hurts.The light seeker understands how diverse we are.  I have just joined this community and have posted several things that have worked for me over 12 yrs if you want to read them.   Good luck

[gibsongal]

i know what it is like when it hurts to wash your hair or use a toothbrush or fork..every thing is stabbing or tight . feeling like your bones are glass and going to break..and too tired to stand up..neck and spine...couldn't type. hands wrapped in ace bandages..
WTF is going on with me….
heat pads, ice packs , baths..
i was going crazy with the pain. doctor after doctor no one knew but to try the meds....tried all the meds.. lyrica cymbalta antidepressants nothing worked for Me.  everyone is different.. yoga,  physical therapy , Would leave me coming home in pain all i could do was crawl up in a ball and cry..

Couldn't eat lost weight…i was 100 pounds! i was slowly dying from not enough food, water or fresh air..

i am  on pain meds now, the right amount..after over 2 years of suffering and trying all those nasty meds that didn't help me.

.the withdrawal from Cymbalta was really bad! took 6 weeks to get off of it.. not taking that again.

. and now can at least eat, cook,(before i couldn't peal a potato) I can shower with out having to sit down, go to the grocery, post office..before i was laying in bed crying..
i am 110 pounds now and can type again!

i want to "fix" this and not be on oxycontin..it's going be be a hard thing to get off of one day…but until then, the pain meds at least give me some life..i can at least think now as before i was just crying in pain..relief is good.. stop the constant pain..

so maybe some pain med relief to give yourself a break from the constant pain..? i know the addiction issues..there are 2 things.. dependent and addiction..i hate the way i feel when i have taken a little too much and so i take the minimum amount…I  want to be off of them, so i am not an addict..yet if i miss a dose or too far in between i get that "sick"feeling of withdrawal..so yea, not the ideal way to go but no one can live month after month in constant pain no matter how many hot baths, massages acupuncture yoga good food and love from family..

i wished that the Lyrica or cymbalta worked gabapentin etc.. i hate being on pain meds and teathered to the doctor and pharmacy.  

the stigma of oxycontin is worse than antidepressants.. but better than my idea of leaving my family and living in a studio apartment all alone because i couldn't stand letting them see me like this.

.better than dying..because now i can type and think and look for a way to get myself better..i can drive more now (i take the minimum pain meds and am not a danger on the road.. actually better than when i was in severe pain crying behind the wheel with knee braces and wrist braces on..

Gong to move to a warm climate as the only thing that has helped me is when the weather is warm and sunny..

when this started with me i was having other health issues..some of the health issues have been resolved, but not the pain and fatigue..

i also was low in Vit D.. (it was summer! and people are usually low in winter moths) and had a lot of stress at the time the pains started.

usually stress never affected me.. maybe this time it did..with my other health things..

in the old days they called it fast nerves..!

[zanykat17]

HI, when I was told I had fibro, and arthritis, along with other ailments I was put on pain meds, and soon was addicted to then. most of the pain I suffered was due to inflammation, which can be from a number of causes, such as not drinking enough water, to agglutination, or a past injury or from a food allergy. In my case I threw the pills away, only after that did I realize that the pills caused pain too. If possible avoid addictive drugs, they only make matters worse, try yoga, aromatherapy, drink lots of water and exercise,these are all the tools that helped me, I also try to remain positive, smile no matter what! and good luck,Im sending healing energy your way. .

[notverysmart1]

Kate, I understand how you feel. The loneliness and despair. The people around you that are supposed to support you when you're down,  telling you that your just stressed or making it up. I had my best friends and family yelling at me at one point when I was at my lowest and wanted to die. It's amazing to me. I had to ultimately forgive them because they do not understand. I had to find the strength for my children. Got on antidepressant which to me was the worst stigma ever. Best decision I ever did besides go back to church. Helped me gain mental strength. Keep fighting. After 4 years of being sick, my issues have turned in to cramping and numbess in my limbs. I still have burning skin, pain and joint issues and thought I had it under control with Gabepentin anf tramadol. Now on prednisone, as well and the pain in my feet so bad I have to take a pain pill to sleep (Percocet.) I got tests back from the Neurologist showing nerve damage now. Something is damaging the nerves in my limbs. I can't promise you it won't get worse. I may lose my career over this and then I'm not sure what I'll do. There are some people here to help you fight. I had dozens and dozens of tests over the last 4 years and the doctors and everyone that's close to me made me feel like I was crazy. Finally I'm getting some evidence. You know your body. Keep pushing. Forgive your friends and family and if you are depressed don't wait another day to get on Prozac. It will help you see the sun again.

[shybee13]

It sounds like your fibro is not being treated correctly. I have tried many meds before finding something that helped. Tell your dr your fibro is not being controlled and ask to try something new. If your dr is resistant to change your meds look for a new dr! I have had to switch several times you can't just settle you need to be proactive and fight for your right to gain relief from your symptoms. good luck to you

[TheLightSeeker]

Hi Kate.

I understand your situation, as I heave been there done that.
It took EVERYTHING out me to sum up enough courage, determination,
perseverance, discipline to pursue a return to better health and wellness,
but long story short, I did it and here I am today alive and very well, giving
people advice on complex health matters.

You can do it too, the first part at least-not asking you to become a health expert or anything, but it will benefit you tremendously if you gain deeper knowledge in health matters.
Informed, proactive patients have a much better chance of recovering from serious conditions.

Please tell me how your fibro was diagnosed and if you don't mind a little
background of yourself, including any significant events from as back as you can remember.
Weight, height, diet, habits, medications, relationships, allergies, results of sleep study, abnormal labs (anything at all) thyroid testing, adrenals etc?

If you stick around, we can dig deeper and try to piece this puzzle together.
You're young and you have a chance to turn your health around.
Hang in there and stay strong.

Looking forward to your reply.

Best wishes.
Niko