Fibromyalgia Community

hi dotpan... i haven't seen you here before but due to hand surgery and flares i haven't been around too much...

welcome to out family... you have come to a great place to find support... compassion... love
and understanding... we go thru the same things you do... you aren't alone in your travels fighting FM anymore...

did you find out before or after you were married that you have FM.... were you sick before you were married... my guess is you were at least sick,,, i also would guess he might have known something was wrong and still said "in sickness and in health..."

i sat down with my husband and told him how i felt... which was just like you... in the end we were closer and knew talking thru the thoughts we had like that was difficult for... i feared hurting him... but not knowing and yet knowing something was wrong... well... we decided that could hurt our marriage... and we valued that to much...

pot helps me too... going thru a pain management clinic i can't use the liyyle bit i use to use... i don't get the sane relief but legalizing it isn't the only fight... it gets legalized and you need a dr who believes in it... and an insurance to help you buy it... lol... and that is a trip its self... it is hard enough not being called a druggy needing a daily dose of narcotics/opiates...

yes i think if one can use if we all should be able to...

if you haven't yet please read the posts on the left... under resources and yips... they are filled with great advice as to how to how to live with and treat FM... the members toolbox is a great place to start...

well hun it is rime to rest my thumping hand... i just had carpal tunnel surgery and was flaring at the time... won't do that again buy I'm thinking i would have would have flared anyway...

take care... bless you... love,,, jan

hi dotpan... got to bed and thought i forgot something... fibro fog lol... i did...

i wanted to comment on you being an artist... i think artists of any kind are wonderful people... they share their world with us...

within their world they share a very dear part of themselves... their hearts and souls...their spirits filled with happiness and sometimes their sadness...
...
you are one of those wonderful people... don't loose that... perhaps you could profile what you feel now... you could do it like a diary... use your god given talent to empty your pain... you could share it or keep it to yourself...

i use words... and have shared some occasionally... for i am a writer... and i use to sing but due to cancer i can't anymore... but i can still wrobble a bit for the grand babies...

well that is what i wanted to say... hope you don't mind me saying it...

take care,,, bless you... love... jan

I KNOW EXACTLY HOW YOU R FEELING. COULD BARELY GET OUT OF BED THIS AM. PAIN AND STIFFNESS,
WHAT MEDS DO YOU TAKE ?? YES, POT DOES HELP,
DO NOT UNDERSTAND WHY IT CAN'T BE APPROVED FOR MEDICAL REASONS. 15 STATES DO NOW.
YES, I APPLIED 2 YRS AGO FOR DISABILITY, HAD A
MEDICAL EXAM BY THEIR DR'S THIS WEEK. HE INDICATED I WAS BAD OFF AND WOULD APPROVE THE AP. THANK YOU LORD. JUST A COUPLE MORE MONTHS I HOPE. GOD BLESS AND TAKE CARE. TALK W/ YOUR DR AND RE-EVALUATE YOUR MEDS.

Dot...so sorry you are having so many difficulties...

What else have you tried? Have you had your vit D level check? thyroid? Vit B level? Have you been on meds like Cymbalta, lyrica or Savelle?

I hope you will read the section to the right called tips and toolbox post....there are some things you can try there to help yourself... Don't forget how important it is to stretch...even if you do it right in the bed before you get up. Our muscles get so tight, that it is important to stretch.

We have had the discussion of pot here many times...and I am not an advocate of it. I don't think people realize the mental damage it does...along with other side effects...until it is too late..and I think there are other things you can do...I have really been putting in the effort to exercise and take vitamins and to work on getting my health to a good place..

cece

hi cece

have you read any studys done in the last 10 yrs or are you going by all the rubish that the gov't has been putting out since the 60's

there are alot of studys that say there is no extre brain cells lost by a pot smoker that that of a person that does not smoke it.

also you dont need to smoke it there are many recipe's out there that you can eat it .

im not a true beleiver in god as many of the people here are . . but i do find it funny that most of us eat man made pain meds everyday but have no faith in a naturaly grown plant. . sorta makes ya think eh!

john

I have to say for all of our progress in other areas we are still stuck on this nonsense about pot, please. I have smoked marijuana on and off since I was 19 and am now 56. I have had periods in my lfe where I did not (usually because of a partner)and it never bothered me not to smoke.

I also graduated college with honors in 2006 and in 2009 I passed the test for a health and life insuranse license the first time and I know nonsmokers that took it several times before they passed. So as you may guess I have never believed it to have caused any mental or noticable physical damage. It does however help with my fm I live in AK and have always been honest with my Dr.s concerning this.

When I told my PA that I found that it was helpful with my fibro, she said in a conspiratal hush that she believed it to be the best muscle relaxer available, she has left the clinic and my new P.A. said that they are supposed to tell patients that it is illegal, but if it works use it.

Well in AK that is not true we are allowed personal use amounts and plants here no prescription or license required, you cannot however sell or transport it as it is not a drug issue here but a right to privacy issue.

I think people are doing other sufferers an injustice when they say that it is not "good for them". I have tried every fm drug all with side effects that were devastating to me. I actually thought that I had early onset alzhiemers and broke down in tears in a department store because I couldn't find my daughter and I became affraid my S.O. would have to put me in a home so I didn't even talk to him about it until I realized it was the drug that made me unable to think even write an address (I had a lot of returned mail for a while) on an envelope.

So I'm with those who know that fibro is in some ways similar for all of us but it is also diffrent for all of us when it comes to what works. I also think that telling people the one thing they find helpful is damaging them.

My brother didn't smoke pot for his long term pain he took the drugs prescribed he died a couple of years ago at 53 because of the kidney damage done by those legal prescribed drugs. So for me I'm going to keep smoking, eating,or otherwise using pot.

For those who hate the idea of smoking you can by a volcano or other vaporizer type machine to eliminate the smoke issue.

Please cite your studies.

hi anon

im sorry that i cant provide that right now as i have a new computer abd i had saved them on my old pc that died the day after i got this 1 well i was trying to transfer everything over. . im still upset over this as i lost alot of info i had collected

i will have to go reading again . . and as soon as i get it i will for sure write about it in here for you.

john

Hi Jan, thanks for responding. I am so new at this...writing and posting on computer...and not great at technology...lol. I've had pain for many years, but also have severe arthritis and one gene for hemochromotosis, so attributed the FM pain to those two things. Actually last April my knees got really bad with the arthritis and when my doctor did blood work...it came back negative. I finally told him I wanted xrays because pain was also in my hips. Nothing showed. He referred me to an orthopedic, who referred me to PT, who referred me for an MRI, who referred me to a neurosurgeon, then pain management (she was awesome and she is the one who finally, like I, felt I had FM) and referred me to a rheumotologist....this was in October 2010. So it took many years to finally know. Unfortunately, I had to retire early due to these health issues....and as a result, lost my health benefits. I thought I would be able to get them, but circumstances have proved otherwise. On a lighter note I have found a resource for primary medical and dental care...Mission of Mercy (check them out on line). If I had insurance, at this time, i would not do pain management for the same reason you say....could not go there and do what I do. During the process of going to one doctor and then another, I was given narcotic pain pills....which for me...did nothing for the FM. So, at age 61 and a grandmom to eight and half precious grandchildren (one on the way)...I have chosen to do what I do for relief...lol. My husband and I have been together for 4 years and married a little over a year ago. No I didn't know about the FM prior to marriage...only the arthritis and gene for hemochromotosis. However, in the past year...the pain became worse...and entered the butt area, both hips, legs, sometimes my arms and feet...so at times I have felt that this wasn't what he bargained for. He is a good man though...understanding...and I can talk to him. Eventually....I do talk to him...lol; but I also fear sounding like a chronic complainer, ya know? So he really doesn't know how much pain I am usually in and how depressing that is...and how debilitating it can be; if I told him how much....he still could only understand so much. My best friend, younger than me, has had this for about 7 years....and with me being a former social worker, we would talk all the time and I could and did empathize with her. Yet, I feel no one can truly 'get it'....really know how it feels unless they have it....and I do not wish this on anyone! Just recently, my husband and I had a nice long talk...and I finally expressed my deep emotions...the pain, etc. We are going to try to implement some healthy lifestyle changes....walking....eating better, etc., and I am also an artist (nothing professional...just something I do). We plan to fix our computer room into a small studio so I have a place (our house is very very small) to do my work...and my plan is to get into a routine (something I've not been in since leaving work in October)....I think that will help; it is not good to dwell on what we can't do...that is just more depressing...and focus on what we can do. I so appreciate you writing...and as I learn how to manipulate and use this technology...hope to learn more and more. Should you want to email me directly, you can: Kmelloyello@aol.com . I do much better with regular email...lol. Thanks so much for your time....your words of encouragement, and your caring...it helps so much. Peace, Karen

Wow...kindred spirits in strangers...how cool!! I too am a writer....again, non professionally. However, I have been writing poetry for years...as a means of expression...and that has also been a release in emotional growth and well-being. I started a book about 6 years ago...and also plan to return to that since I am no longer working. Currently I am working on a poem to present to my youngest daughter-in-law at her baby shower, for her first...and my eight grandbaby due in April. Over the years I have also written poetry for special occasions and given them as gifts for babies, weddings, etc. Hope to hear from you again...and thank you for your words of comfort and understanding. Karen

Thanks for writing. I don't take any medications....I learned that the only things that help is what i do already. I have a disability application being processed at this time. Currently I am without health care, but in the past had pain meds for another reason....they didn't help the FM at all. So for as long as it helps....I will just do what I do. God bless you and may He take care of all of your needs.

Currently I am without health care, but found an amazing resource Mission of Mercy who treat people for free. The doctor from MOM just ordered blood work to check various things, one being thyroid, so I am waiting for those results. I also take depression meds, which I have done for years. I really don't know much about Lyrica or Savelle, but they too come with a long list of side effects, just from what I see on TV ads. Many people, I know, don't approve of pot, but it does work. I am one that believes the side effects of that are minimal to many other things on the market...prescribed pain narcotics...alcohol; But we each have our own opinion...everyone does and that is part of life....and the uniqueness in how God made us all. Thank you so much for writing and for your advice. Bless you.

hear hear John! I am a true believer in God, but agree with the rest of what you write. Often, people fear what they don't know....we all just have to go with our own beliefs and values and what works for us. Peace and thanks for writing.

Well said...thank you