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9 Replies
an_unhappy_hurt - May 21

Hello All,
I was sent to a rheumy by my general practitioner over 17 years ago. therheumy said that I have fibro. I went back to my gerneral proactitioner and he said, quote "you don't want to have that". Duh!!! For one thing he didn't believe in it and had no idea how to treat it. It is not the only thing I have. I have degenerative bone disease, osteo-arthritis, bursitis and ther things. When my doctor retired, I changed medcial groups. I have an Internal Dr. for my primary care. He sent me to a rheumy and I have seen him ever since for my fibro, arthritis and other things. I have noticed just recently that I have become VERY tired. This is not like me. I know that CFS goes hand in hand with fibro, but I didn't think it would happen to me after all of these years.
I was wondering if any of you get trigger point injections.
I am a 55 year old woman on disability. My childfren are grown and I have grandchildren. We recently moved to a 55 and above mobile home park because I just couldn't keep a huge house clean anymore.

unhappy hurt


an_unhappy_hurt - May 22

I was hoping that someone would chat with me. I recently met a woman that told me as I was leaving that "we've got to talk". I asked her about what?? she said that she HAD Fibro and CFS, but no longer has those problems. I'm thinking this lady never had the problems because as far as I know there is no CURE all. Any idea? I get more painful the older I get. Also, if I take a day with the grandkids, cook, play etc..I will have to pay for it the next week with horrible pain.
unhappy pain


January - May 22

Hi - I'm happy to chat with you! I read your post earlier, and didn't have time to respond… but I wanted to say I can relate to being overwhelmed with the work of keeping up a house, (and also with the medical run-around)! I'm older than you are. I guess it is just the way life goes. Aging is hard to take, especially in this country, and it's even harder if you have illness or disability. And there's no cure for aging. You sound down and frustrated. I sympathize, and I hope you will come back and talk with us. There is a very supportive community with so much intelligent input from many people with different backgrounds and approaches. I've learned a LOT. Sometimes this board is busy and sometimes not. You just posted during one of the "not busy" times. But welcome. I know people will write to you, so please keep coming back.

I was diagnosed with fibro a couple decades ago also. I cured a lot with a gluten free diet. (My rheumy now tells his other patients to try it.) You can get a simple blood test for celiac antibodies to see if you are allergic to gluten or have celiac disease. I highly recommend the gluten free diet, which is similar to the Adkins diet - but no processed food with gluten in it. No cereal grains or flour products. No "food starch," unless it's cornstarch. Just eat real, healthy food: meat, veggies, rice, fruit, some dairy. Others on here have posted about this diet helping their pain. I have pain from other things now, but I feel that my fibro pain (what I had initially) is gone. Also, after a year, all my bloodwork normalized, I lost the weight I had gained on meds, and my immune system got much better!

Like you, I have other conditions that cause pain for me now. The antidepressants made me really sick and never helped my pain; I refuse to touch another one. Withdrawal was awful, but once it was done, I realized those drugs were CAUSING severe fatigue and many nasty symptoms. So stopping them made me BETTER. I found other, older drugs (cheaper too) that help me with sleep and pain; I cut them up and take the lowest dose I need. I researched and tried a number of supplements to help with energy and immune system. (Make sure your dr. knows if you are trying something, and google the supplement and read about side effects and interactions.) A couple things that help me with energy are acetyl-L-carnitine and a mix of ginseng and gotu kola. But everybody's different. St. John's Wort helps some people, but it made me sick. Take a good multi mineral/vitamin every day. Not Centrum, but something like Solgar that is free of dyes and additives.

Yes, I had trigger point injections. My regular doctor did a horrible job - one big shot and it hurt - no help! However, I went to an acupuncturist/anesthesiologist who used a very fine needle, went slowly and adequately numbed me, and gave me a lot of small injections around the trigger point; I also had deep (painful) massages. After a few months, the big trigger points went away, and so did the pain they were causing. Permanently!

If you have CFS, that is depressing in itself, you are so tired and it's hard to think straight or even retain what you read. Please believe that you can find help for this! I think, besides depression, a lot of CFS may be related to infections of some kind. You can easily pick up a mild form of encephalitis from a virus, or invasive dental work, or even a mosquito bite. Encephalitis can give you brain fog, body aches, and fatigue. I realized that when I took antiviral or antibiotic medication, I FELT BETTER! It GREATLY helped my CFS, and more specifically, the brain fog symptoms. I have had times when I knew my brain was not working normally. Treatment with antiviral or antibiotic cleared this up! If you google "encephalitis" and read different sites about it - you may change your mind about treatments. The problem is finding a doctor to work with you!

Google "viral causes of fibromyalgia" and read some of the sites that come up! We can't post links here, but one good site is CFS central; there is a good online forum there. Google "Dr. Dan Dantini." I haven't dealt with him, but he takes an approach to fibro that tests for and treats infections. He has some very good patient ratings online, and I think he might work with you by phone..? Read up on the old threads in general discussion - lots of great info from many different people.

There are herbs and supplements you can take to support your immune system, and I think this an important part of treating fibro and CFS. Check out Life Extension and The Vitamin Shoppe. They have sites where you can plug in symptoms and research what supplements might help you. (Make sure a doctor knows what you are taking and don't overdo it on anything. I recommend carefully trying out one supplement at a time, low dose, so you know how you react to it. Stay away from the mixtures that some people market - if there are many ingredients you aren't familiar with yet.) There are always new things coming out about supplements. Vitamin D3 is important and can help with pain. An excellent psychologist told me years ago he always recommended extra B-complex for people with depression.

There are so many things you can do to feel better - you have to learn about them and try them out. I know it's hard when you feel crummy, but I hope you will try. Just one thing could make a difference. Like I said, I'm older than you are -- and I'm BETTER than I was! Don't believe there is no cure for fibro. Of course there is, we have to find it! But I wouldn't count on the medical profession. Google "Big Pharma" and do some reading about that. : ) Hope you will soon feel better!


Pikespeak - May 23

Excellent post January! I haven't posted lately as I have had another visit with my Dr. who is very interested in my interest to be healthy, despite FMS! She gave me some transdermal patches to try on my glutes (stay tuned for results), upped my Savella at night to 50mg. Now have a bladder/UTI infection, possibly due to the slight constipation from Savella. Have an appt. with the urologist to see if there is some organic reason for repeated UTIs. I still am doing well on Savella with minimal side effects. The Dr. said that the full dose is 100mg/day, but they take you slowly to that dose as people who were quick to take the full dose didn't like the side effects and quit the drug. My days are filled with walking (45 min), reading, gardening, napping, stretching, meditating/self-hypnosis and watching the birds...we own a brick and mortar book shop, so I often go in for a couple of hours when I'm feeling rested. I no longer make promises I can't keep and am very up front with people who wish to involve me in their projects. It has been very hard for me to be selfish, but I am learning to put myself first! I no longer fret about my organized chaos and as much as I enjoy cooking, I'm not up to inviting people over too often. The freedom to have that kind of controlled restraint is empowering! For anyone interested, Arthritis Today (a wonderful mag!) had an article on letting go of the guilt that comes with not being able to do what you once could do. Enough from this old girl (age 57) tonight--stay positive!


January - May 23

Hi pikespeak - HAPPY BIRTHDAY! YAY!! You sound like you are doing GREAT! You are much more active than I am. I say keep going. I am trying to get back to being more active -- but a long illness kept me down for years and my muscles get mad if I push them too much! Still, if you don't use it, you lose it, so gotta try!

Glad the Savella is working for you, and without bad side effects; it sounds like you have done it the "right" way -- you must have a good doctor. I like learning about how things work for different people. Do you feel the Savella has lessened your fibro pain? Why are they increasing the dose if you're doing well on what you're taking?

And it's so true that you just have to take it one day at a time. I never know until I wake up what kind of a day I'm in for. If it's a REALLY bad one, I explain I have to cancel out and rest. I learned years ago that if I pushed myself I just got sick. Not worth it!

How cool that you have a bookstore where you can work when you feel like it. That's as good as living in a library, but better - you can sell the books after you read them LOL!

PS - i just googled Savella side effects and drugs (dot) com lists urinary problems, including cystitis as a side effect, if you scroll down. Apparently, this occurs more often in men - but scroll further down, and it IS listed as a general side effect…. so you might want to check on that possibility? Hope you get some relief for that, it's miserable.

Cheers : ) and again HAPPY BIRTHDAY!


Pikespeak - May 24

Hi January!

Let's see if I can answer your questions...not sure how you figured it was my birthday...back in March...thank you and happy birthday back, whenever that might be!!! ;-) The Savella isn't really taking care of my pain that wakes me...the MAXIMUM dose is 200mg, but the reg. dose is 100mg. I'm now at 75mg. The lidocaine patch (Lidoderm) worked really well on my glutes last night, along with stretching, Flexeril and Ambien. Only woke up at about 6 am, then went back to sleep until 9!!!!

As for the book shop, I was a librarian when my husband (whose family has been in the antiquarian book business since 1946) met me, so it was a foregone conclusion that we should be together! He is very understanding about my limitations and is willing to have me when I feel up to it. We have 13,000 books for sale online and 80,000 books in a warehouse. Plenty of work anytime I feel like getting busy! It does keep the mind active!

Did you see my post on being positive? I thought for sure that you would have a great idea to share! Hope you have a great day tomorrow!


January - May 24

pikespeak -- LOL! I am laughing so hard! This is what I get for staying up too late at night! I obviously mixed your post up with one I read before it - saying 5/23 was the birthday. So to WHOEVER out there, HAPPY BIRTHDAY! Gosh… and I think I know what I'm doing….

Oh yeah! I have a really bad lower back - Lidoderm is GREAT! I use it over my spinal area. My dr. told me it works even better if you add a heating pad - it helps your body absorb the lidocaine.

I'm actually still working my way through reading… the site got really busy - so I haven't got to your other post yet - but I will. (Right now my compulsive side is wanting to go back and find out whose birthday I read about and mixed up with you!) On the other hand, I should get some sleep…. : [ But as to staying positive, my line is "laugh all you can." So I'm laughing at this birthday post! (And it WAS heartfelt too!)

I LOVE books. I live in "my library" and someday they will need to get a crane to shovel them all out! I write notes all over them, so it's hard to give them away. I have to be really strict with myself about how many books I can get if I go to a bookstore! It's my one and only vice! : )

So, again! happy belated birthday to you pikespeak - and thanks for the reciprocal wishes! ROTFL! It's good to celebrate your birthday every day, don't you think?


an_unhappy_hurt - May 25

thank you for taking the time to let me in on all of the info you listed. I will try googling all the stuffas I can. My c-spine is fused from C-2 to C-6 and I have a difficult time sitting at the computer for any real length of time.
Can you give me a name to call you. All I know is that you are older than me and much more knowledgable. BTW, please excuse my typos, many of them are just a dyslexic turn around (all the letters are there, just in the wrong order).
I'm going to try to get some organizing done today.
It's raining here. I'm glad, because when the storm front gets this far the fibro lets up.

unhappy hurt


axxie - May 25

OK to everyone HAPPY BIRTHDAY TO YOU AND TO ME, I was reading the post so fast, I hope I got that one right.

Gees, being unhappy and hurt well we've all been there, and to tell you the truth, you have to work at it everyday. There is not one day, that I do not know that I have fibro, but I do have days that I feel better then others.

I too are in your age range, I just turned 54 in April and well how do I feel, today the pits and so so tired, tomorrow is another day, and what I can't clean today I'll clean tomorrow provided I do not find myself another excuse for not cleaning it.

Today I was nostalgic and really thinking hard about pulling the plug on working, some of you know me from other posts that I had returned to work and that I was feeling fine. Well lately I'm feeling pain and very tired, and on those days it's when you feel unhappy and very tired and achy.

Please dear girl just one day at a time and come on this post and post we'll get back to you and lift your spirit up, you'll see.

As for fibro and yes being tired it goes hand in hand. But you have to push yourself off and pat yourself for getting up and you look outside and take a giant leap outside just for a few minutes and then try to work around the house, yes, even when it hurts.

I to have arthristis and I'm in pain but I foudn I'm happier when I try some little exercize such as doing something physical. Just keep pushing girl and do take care of what you eat and do get yourself a list of vitamins you can take to help you along every day.

Good luck to you and happy birthday again, from a friend who just had her birthday last month..... and to all my friends happy birthday anyway,


January - May 26

Axxie - nice post. And welcome to the midnight brain fog birthday club! Happy birthday to everybody everywhere! LOL



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