Fibromyalgia Community

Hi Rachael...I am so sorry you are having so much trouble right now...

but I did want to welcome you..

what are you doing to deal with this? Have you tried Cymbalta, Lyrica or Savelle? Do you use warm baths and/or heating pads? Do look in the section on the side for the tips section and look for the member toolbox post started by Nancy B...I hope you find some things that can help..

and feel free to come here and complain anytime..we all understand...been there...gentle hugs to you.

cece

Hi Cece, thanks for your response! Well to deal with this mostly warm baths and they have not been helping much. I am very sensitive to medications so i quit trying stuff. I was prescribed cymbalta but way to expensive and to many side effects to add to what i already have. I'm scared to take anything because of all my bad reactions and bad luck.

Rachael, way back in the dark ages when I still had periods, it was awful. I'd spend a whole week storing fluids: less urine, no bowel movements, dry skin, bloating. Then the floodgates would open. Cramps, heavy bleeding with clots (they hurt to pass), moving bowels (first all the stuck-together rocks, then the loose stuff), backaches, and more cramps for seven days.

One day when I was 35, the OB/GYN suggested a hysterectomy. We did it. I won't say everything was great from then on, but it helped even things out throughout the months. My mother had 5 sisters. They all had hysterectomies around 35. (My sister, the perfect size 8, is still intact at 66.)

If your monthly cycle is a contributor to your FM pain, talk to your doc. I'm sure there are less invasive fixes now. If not, I'm one lady who never looked back. The backaches switched from 1 week out of 4 of horrible pain to something that came as a result of overdoing things. There is arthritis at L-4 so I know pain is inevitable, but it is a shadow of its former self.
Hope this helps.

Towards better days,

BetteK

Hi Rachael,

I'm sorry for your misery, and at such a young age! When your body feels like that it seems to take over your whole life for days.

Have you discussed this with your physician? After years of suffering I finally saw a new doctor who 'heard' me and started me on a low dose hormone therapy. Finally I was FREE of being tied down to the pain bloating headaches and bathroom schedule that my ovaries were dictating!

Okay, well that was dramatic, but that's how it felt. It was started when I was around 34 and I stayed on it for about 5 years. When I went off it, some of the old problems started up but at a much lower level that was managed by Aleve and heating pads.

If it was me now, I would also try naturopathy, yoga, and massage, to get some good body work in the mix.

I hope you find a way to get relief!

Good morning Rachael,

Rigth away I thought of the monthly foods you are putting in yourself prior to your menses. We are such a bag of hormones and chemicals. They say that cutting down on protien during the month helps with clotting periods that are cramping and painful.....lowering salt will help with some bloating...

But maybe the doc can put you on birth control pills to help. They have just the slightest doses now. It may help regulate the hormones.

I am such a fan of the green diet. EVERYTHING green every vegatable known and seen be green and meat chicken and fish. I paid alot of mone for this detox diet.....I also used a product called green vibrance* I bought in the health food store. In 3-4 weeks I was so much better.

I was near leaving (killing myself) I couldn't walk in the morning out of bed and work just was unbearable....my usband to me to this friend of his a physiatrist and he did all kinds of things at 65.00 a visit. I had to stop due to cost, but I learned soooo much.

He also took me off of soda and crap...water only, no diet products with the splenda chemical.

It helped my body so much to hydrate and be better. Never fixed, but better and workable to move. For the first time I could stretch my mucles out....and it felt good.

So, look inot eating for your health. try the green is mean approach....it made such a diffeenc ein me. To this day i still only drink one cup of coffee and all water all day........

You do what you must to inch a bit better. This made me take a leap so I stayed with it. We still have 2 green vegies with dinner every day.

I wish you luck in finding the approach tha will help you. For me PAIN is a great MOTIVATOR...I was to the point I would do anything to break the cycle I was in.

Take care, Nancy B

http://forums.webmd.com/.f0324a2?@guest@ This should be the link to the MEMBERS TOOLBOX. hopefully* look in it for tricks.........((((((.Hugs)))))) Nancy B

Hi BetteK! Yours sounds just like mine! HORRIBLE!!!! I just feel sooo drained after and still 3 days later im still recovering. I just don't get why my fibro feels worse around then? Huggs!

Rach, fibro is mostly a matter of messages gone wrong. The wrong neurochemicals are running rampant. Unfortunately for us women, they are joined by hormones going crazy.

That's just the nature of the beast. And fibromyalgia is a beast. We can tame it with stress reduction, sensible diet, and a little help from the pharmaceutical industry, but sometimes we just have to wait out the bad days.

(I know about hormones. When I was young and single, I was a research technician at Ortho Pharmaceutical, the makers of Ortho Novum and other birth control pills. Trust me hormones rule your body. I had to stop working to get pregnant.)

Towards better days,

BetteK

Dear Rachel,

I got FM 14 years ago, i.e. since I was 19. There's no medical insurance subsidied from the government in Hong Kong, here. One may have to wait for 9 years for a check of cancer in public hospital in HK.

Therefore I've really spent lots of money on FM. Some friends criticize me spending lots of money and don't go for work. I do want to do what they comment on me. I tried my very very very very best to ........ I feel it's difficult to accept myself not going to work and be hard-working in being promoted as I'm living in a society that people's own value depends on prosperity. I'm not a responsible person as a bachelor degree holder in the eyes of HK people, not making living, etc. Luckily my family is still supporting me.

When I was at the age of you, my mum was suffering from leukemia and it was the year that SARS were spread in HK and all over the world. When I was also suffering from FM syndrome like pain, aches, fatiques, short memory loss, dizziness, etc. still at the age, I couldn't imagine how I completed my bachelor degree when I was 23!

I can manage FM for some years in between through Chinese Medicine, CST, etc. I got very bad in FM last year and seldom be able to go to work although my friends persuading me to put much effort in job seeking. Although tried many many many methods alst year, until I met a Chi Kung teacher last summer, I can manage around 60-70% of my pain and fatique. I went full-time work for 3 months then. However now I'm suffering from frequent urination problem and difficult to go out for a while /_\.......

I should praise myself and support you for I have done my very best , too but it's quite difficult for me to parise myself among the eyes of HK society as I'm not going to work for my own living, hard-working on buying house, etc. I worked in patient support groups and have been working in the rehabilitation field, I supported patients of other chronic disease to praise themselves and suppor teach other but I found it's difficult for me. There's too limited resources for FM. In return, I'm still feeling lost in helping myself.

I wish that you are doing better than me in getting supported and praise yourself what you have done for each little thing and everyday. I wish that your support and resources are better in your country than mine.

I feel loss today, too. I've spent days through internet and phone to search for medical resouces again. May the wisdom and love be with you and all of us.

blessing,
Jane from Hong Kong

While in a nutshell, I still belive in Chinese Medicine (Chi Kung, Accupuncture, etc.) more than other therapies. Maybe other alternatives in HK are not so well developed in western countries although we still can find CST, homeopathy, Feldenkrais courses, etc. in HK while I think Chinese Medicine should be the best in HK among the world (although it's chinese medicine but everything in China is messy and therefore I think HK is better....)

I wish you can find your way in managing yourself, it takes patience and wisdom to. We are always the one who know ourself best

wish you well, too
Jane

Jane, the frequent urination got me. Here in the U.S. we can get disability insurance, but we have to fight for it. You get a letter saying you've been rejected. Then it's time to hire a lawyer and file an appeal.

Well, on the day of my appeal, we arrived an hour early in case the lawyer had any questions or anything. It was held at a library an hour from home. One of the office doors was open and my husband and I could see an inexpensively dressed woman working at a desk. I was nervous. So was my bladder. I was returning from my sixth visit to the ladies' room when the lawyer called me into a conference room. There were about a dozen people there. A robed judge sat at the head of the table. It was the woman from the office, the one who had seen all those trips to the bathroom. I was awarded my disability. No questions asked.

Would you believe you might be thankful for those embarassing urges some day? Believe me, I was.

BetteK in rural New York State

I was so afraid that my repvious reply to Rachel was adiscouraging one. I really wish that young people would be much better than me (inculding health condition, support and resources).

I don't wish to give discouraging reply here. I really feel very thankful to you, Bette. however, what you say is a joke, not even a dream and it's something unrealistic in HK.

My graduate paper was on pain/ rheumatoid arthritis research, I did a post-graduate studies, a Professional Diploma on Health Education and worked for chronic disease suuport (Cardiac and Dementia) before. However for FM, these are jokes in HK. Even I can't expect friends and relatives would understand me, I just hide up and avoid meeting them. Even the hospital asked for stopping blood test on me, the Hospital Authority/ Government in HK tries to minimize welfare on lots of acpects. This happen after HK back to the rule under China.

Bette, where do you live? I really miss NY. I went to NY in 2010. My grandaunt and cousins were there but leter old grandaunt passed away peacefully and everyone left NY.

wish you all well!

BTW, it's seems I have some improvements when practicing Chi Kung and Feldenkrais. I wish the improvements go on. I still wish that I can go back to work. We have no say for allowance/ subsidies (we may have some chance if we are lame). We have to have empower on our own-selves.

best regards,
Jane

BTW, so lucky that my grandaunt was in NY that they don't need to worry about medical recources, cost and support.

Jane,

New York state is quite liberal in its medical benefits. This is good for my mentally ill son who gets his care basically free. It is not so good for taxpayers.

We have one of the highest tax rates in the country. We pay sales tax on pretty much everything but groceries (8 1/2 % in our county). We have a state income tax in addition to the federal income tax.

We live 10 miles south of Wellsville, NY, right along the Pennsylvania line. It's a very rural area where dairy farming used to be big business. We live in the foothills of the Allegany Mountains and our fields are small. We also have long, cold, snowy winters. Our farmers cannot compete with those in the midwest who have larger fields for crops or those in the South who can keep their cows in pasture all year long.
In consequence, we are in a very poor area--perhaps not as desolate as some of the rural South, but poor enough.

BetteK

hi Bette,

yup the groceries tax is very high, once I got to the supermarket and did a supper for my relatives, I was chilled about the prices. HK would be 50-70% less.

it's fair. HK might be the lowest tax-rate-country in the world.
The wealth and poverty seems to be much extreme than I saw (but I stayed in NY for 12 days only).

May God bless you, too.
Wish that I would have chance to meet you in future. I still miss NY.

love,
Jane