Fibro Chronic fatigue syndrome and fibromyalgia

[mamachick]

Good video Lionheart. Good resource for family. Thanks for sharing

 

[Lionheart]

Well I have found the CFS forum to be very disappointing.:( They speak of pacing oneself (which is a must with this disorder) and slowly increasing physical activity, (which is difficult to do when you have exercise intolerance), then they talk a lot of cognitive therapy (which I am already well versed in) and lifestyle changes (which I have already been forced to make). Some of them recommend vitamin and supplement therapy but these things have not been proven to be helpful for CFS.

I am receptive to the fact that I have to live within my limitations, but I sure would like it if I could stretch those limitations to include more physical activity and to have less fatigue and fibro pain. I am anxious to get moved to a smaller town, in the near future, where I will hopefully receive better health care treatment. I am firing my present doctor, ....I have had enough of being ignored and told to take Tylenol. :mad:

Sorry if it seems like I am whining, I am just really frustrated with this disorder!!!

 

[mamachick]

lionheart-i know you're not whining, its very frustrating. Seems new symptom appear regularly. It is very discouraging and in combination with ptsd its almost impossible to keep a positive attitude even with lots of cognitive therapy. Just know you are not alone.

 

[Lionheart]

Thank you (((Brat)))!!!!!

...seems like doctors could give me some muscle relaxer or prescription strength naproxen or something of the like for the pain and maybe some vitamin B shots for energy..... I dunno, just something besides lip service, ya know?

I appreciate your letting me know that I am not alone...it helps!!!

Healing hugs
LH

 

[Lionheart]

Now I am wondering why the doctors do not have me on Cymbalta and plan to ask them about it. Cymbalta is indicated for fibromylagia, major depression, and chronic back pain....all of which I have. A friend of mine who is a nurse, asked me why I wasn't on Cymbalta and I couldn't answer her.:confused:

I was thinking of asking the doctor for prescription strength naproxen too, but I am already on a NSAID for arthritis and don't know if I can take naproxen with it or not.

One way or another I am determined to get this cfs/fibro business under control once and for all. :tup:

 

[mamachick]

I have fibro/cfid over 20 years, traumatic brain injury 5 yr ago with ptsd symptom, in accident 5 yr ago I broke rib and collapsed lung and for past year breathing getting much worse (never same since collapsed lung), arthritis, some female stuff, abnormal sleep which causes daytime sleepiness, irritable bowel, etc. My latest is an ankle so weak that I cant go down stairs-my calf hurts and I have muscle spasms that awake me all around this ankle??? I get really discouraged sometimes. Massage helps some but who can afford this regularly? They told me I cant take cymbalta but I dont remember why-thats the brain injury lol. The only part of me that I have working is my humor and that is only working at 50% capacity. Then some ER dr could not understand why I would be depressed after an assault-acted as though I was insane-go figure

 

[Lionheart]

Wow, it must be difficult to keep a sense a humor after all of the things you have been through and are going through!!!
I have had cfs/fibro for about 13 years, PTSD for no telling how long, and I suffer from COPD as well. The COPD is the only disorder I can really do something about and I have set a date to quit smoking on Nov 1st of this year.

Have you ever tried the medication Lyrica for fibro? My mother takes it and she says it helps some. I am hoping that I can switch from Celexa to Cymbalta. A person can only take so much fatigue and pain before they are forced to do something about it and I am now at that point.

I cannot afford massage on a regular basis either and have never had it done professionally, but it might be something I decide to treat myself to in the future.

Some doctors just don't get it, but I bet if they had to go through the kind of stuff we do, they would be inclined to be more helpful!!!

Am keeping you in my thoughts and prayers....
(((healing hugs))))
LH

 

[AngelKeeperJ]

The only part of me that I have working is my humor and that is only working at 50% capacity. Then some ER dr could not understand why I would be depressed after an assault-acted as though I was insane-go figure

Having a sense of humor is the best tool in fighting against ANY issue. More people need to have one!:p

I get irritated with some ER docs. Lots of them are 'rookies', and truly are PRACTICING medicine! If I wasn't a former medical assistant, and didn't take everything they gave me, I'd be DEAD! And, having worked in the field, I know what many of them think, once you have 'depression' stamped on your forehead. PTSD wasn't a term yet, way back when I started in medicine, and SOME of the newer doctors are more educated in mental health issues. As long as they don't have that 'Dr. God' persona, I can deal with them.

Sorry you have fibro, and COPD, too!

AKJ

 

[AngelKeeperJ]

I cannot afford massage on a regular basis either and have never had it done professionally, but it might be something I decide to treat myself to in the future.

LH,
If you can ever afford it, it is absolutely AWESOME!! I was lucky, and a friend of my son's was in school learning to be a massage therapist. They have to complete a certain amount of hours of practice, so they take donations only, so she was very inexpensive.

It was THE best thing I have EVER done for me, and it was wonderful! I was able to get one every 2 weeks for 6 weeks. It was better than I can even describe. I have body issues and was worried about the total body thing, but they are taught proper draping, and I was totally comfortable.

As the knots in the muscles get broken down, it releases endorphins, which I think we all need more of. I highly recommend them. If there is a massage school anywhere close....they need bodies to work on!

I'm very blessed that I haven't had the Chronic Fatigue along with my Fibro, and hope I never do. If I overdue, I pay the price, so I've learned to pace myself, most of the time. Also figured out that the more I move around, the less I hurt. Most of the time.

God bless your day, and may your pain level be low!

AKJ

 

[Lionheart]

(((AKJ))),

There is a reputable massage therapist nearby in the same building as my chiropractor, I may give them a visit. :) I didn't know that massage could release endorphins, that makes me want a massage even more. lol For now, my pain level is low, but the day isn't over and I have to be prepared for sudden flare-ups. Am praying and keeping my fingers crossed that this will be a good day....so far, so good.:cool:

healing hugs,
LH

 

[Artemis]

Chronic fatigue certainly came together with my PTSD. I was feeling a whole lot better till I was retraumatised a week ago, and all my old symptoms hit me with a vengence after.

TCM (traditional chinese medicine) states that emotions are the precursor to any illness the body experiences except for direct trauma to body by accidents and so. I have found this to be true. There is always a emotional, mental or past history which directly relates to the symptoms experienced if you tune in enough to be aware of your body. I will probably always have to be careful with what I do, eat, think, experience for the rest of my life in order to manage the CFS and PTSD. I also have regular supportive treatments such as accupuncture and massage to help me manage my symptoms.

 

[mamachick]

Some massage therapists will even give package deals of discounts and it makes it maore affort]dable. Lionheart-after a good massage, I feel high or drunk almost (not that that is what I am seeking), just dont know how to esplain the effects. Just walking around in daze without a car and everything relaxed