Maybe research this..

Maybe research this.. [2008-01-16]
I had muscle issues and read somewhere that after doing activity, you shouldn't immediately apply heat. I was always taking warm showers after activity because it felt good at the time, but read somewhere that you shouldn't do that - it somehow damages the muscle more. I'm not sure if that would apply in cases of fibro, but may be worth asking/researching. (only thought this because you mention the jacuzzi) I think the dance class is an excellent idea. Good luck!!

I felt I should post again, because I don't [2008-08-23]
give anyone the wrong impression in case anyone is following, who may be experiencing the same thing or thinking of starting on these dang narcotic meds for pain. I feel awful this weekend. Thank goodness I'm off for 2 days. It never impacts my work. I mean, its not that bad, but it is a constant sick feeling as if one got kicked in the stomach, or had a car accident - that sort of blunt force trauma feel. I am having lots of headaches now as well. I guess I was just at a good point earlier. Now I am at half my original dose. I wish it could be a bit slower, but I am trying to do this on my own. You are so right, I should go to my PCP about it, but in my experience, the other doctors really treat you like garbage once they know you go to a pain management specialist. There is sadly a lot of stigma placed on chronic pain patients, which is why I feel so badly for others in this situation. I have done a lot of research and see now that this was the best choice for me to make. I may need surgery someday, who knows, and I never knew that one can actually completely be immune to even the most potent IV pain meds if you have been on oral narcotics for years, even at a low dose. I never knew that - this pain clinic doesn't ever talk about anything, just pushes the scrips at us. What a horror that would be if I needed surgery and could not get pain relief after surgery. I'm brave, but not that brave. I have a potential gallbladder thing coming up, as was as GYN procedures that may be in the future, and again, I had no idea. So, I'm here, just not feeling all that perky this weekend. But that's OK, as I figure I'll have lots more weekends to feel great. Again, I am just posting more to let others know that this was not that easy a thing, rather than just wanting to whine at you all again. Peace!

P.S. [2008-05-19]
I just posted a response above in the MS thread. I began to describe a discussion that I had with my daughter last week about the issue of death. I didn This is for people who are basically alone, unmarried, and who have no access to life insurance. Its intent is to help anyone who finds himself/herself in that position. When I lost my health insurance, I also lost my life insurance, and I certainly can (I had had shared the below information with her before in a conversation, but apparently she had forgotten it.) Just in case anyone else out there finds himself/herself with a fatal disease and doesnMedCure to be a donor once I pass on. This is a company that uses human remains for medical research. They will pay ALL costs associated with removing my remains from my place of death, pay for a few death certificates for my family, cremate my remains and return them to my family (if that is what my family desires). This is ALL done for FREE -- doesn They gave me two cards: I keep one in my wallet and the other one in my special box with other important papers. If anyone out there finds himself/herself with no life insurance for whatever reason and cringes at the thought of their family being saddled with burial costs, this may be a suitable alternative for you. (I believe there are other companies out there, as well, that offer the same or similar package; MedCure is simply the one I chose.) I hope this information may be of help to someone.

high ANA [2008-05-02]
As I was recently told I had an elevated ANA....I have done some research and an elevated ANA can occur in people that are healthy individuals, if your family has a history of autoimmune disorder, if you are female and of older age...among the different diagnoses...Scleroderma, RArthritis, Sjogrens, Hashimotos thyroiditis, hepatitis, some viral infections, type 1 diabetes, addison's disease, certain medications (Aldomet, Enbrel, Remicade), polymositis, Raynauds syndrome, vitamin b12 deficiency, idopathic thrombocytopenia, fibromyalgia, and anemia. There are so many different reasons an ANA can be elevated. Also, an ANA can be a false positive in some otherwise healthy individuals if the ANA is positive and no symptoms are evident.

Thank you, Janie. [2008-03-20]
Wow! I couldnprofessionals, at least the ones that seem to hold a monopoly on their respective practices in my town. I sure hope you have a different doctor now!! I will definitely investigate saline infusions! Thanks for the tip. As I I can also give credit where it's due, and after yesterday, believe me, it's DUE! I had an appointment with National Jewish Medical Center in Denver yesterday. This appointment lasted six hours, but I didn The entire experience moved like a well-oiled machine. They made my local hospital look like a butcher shop. As noted, I HAVE done a lot of research into this (especially pancreatitis), but it In my case, my lung disease is mild. It The doctor yesterday told me that eventually (probably in a few years) my pancreas pain will go away because my pancreas is basically cannibalizing itself. Once it finishes destroying itself, although Idead pancreas, I won I probably will develop diabetes, though. Unless I develop pancreatic cancer (or cancer somewhere else in my GI tract), though, he told me that my lung disease will definitely be the cause of my death. They gave me so much stuff yesterday, including a very nice book (hard-bound, no less), Now That I Have CF. The entire book is devoted to adult-diagnosed cystic fibrosis. National Jewish is THE place to go for this disease. This is their expertise. I had previously felt as if Iwolves and had lost all trust and respect for the medical professionals as a whole. My experience yesterday has restored my faith. They gave me prescriptions for a box (5) of Fentanyl patches, more Vicodin for the pain that isnhospital worthy, more Xanax for the incredible anxiety I have (I awake in the middle of the night, panick stricken, almost every night.) They re-began me on paroxetine at double the dose I had previously been on, feeling it might work better for me. They gave me an Acapella device to use daily that helps to get rid of the mucus. (I was surprised to find that the use of this device, as they directed, is exhausting! Now I understand why patients with cystic fibrosis are so tired as a result of the treatment they need to undergo.) They gave me an entire box of Creon sample bottles (pancreatic enzyme). They gave me samples of Qvar, Pulmicort, and two ProAir HFAs. They advised me to apply for Social Security disability, and I met with the social worker for a very long time. She also wants me to have my CICP (Colorado Indigent Care Program) case re-rated because she feels I'm paying too much now that my income has decreased so much. The only snag is that if I need to be admitted, they admit through a university hospital near them, again almost 80 miles from where I live. As it was, we had to rent a car yesterday to get there, so I don That A few weeks ago when i had a hospital-worthy attack, the two patches previously given to me by the hospital (which I saved) helped very much to get me through the attack. Only drawback is they take a while to get into your system, but once they do, they last for three days. So maybe these new patches will help prevent another hospital admission, as the others did. Iofficially in the CF register, and I've very eagerly agreed to participate in any research projects where they may need my help. I don

I have just read your post and [2008-03-19]
I recently heard something about saline infusions (think I am right about this) being helpful in the treatment of cystic fibrosis. Please do research on this (I would think you would) because as you and I both know, seems like the medical profession really lacks now days in terms of competency. I told 1 physician I went to about a diagnosis and he had the nerve to roll his eyes up towards the ceiling. I told him I did not make the diagnosis, another physician did and I was just relaying. Name it what you want but just wanted some relief from my symptoms. I hope you will keep in touch with this posting and let us know how things go with you. Please do research though because you sure cannot put any confidence in many people.

I am so sorry you are going through this. [2007-10-26]
I too have gotten very sick of medicine. With my own research I have occasionally solved a medical mystery for myself that docs just wanted to treat by going by the numbers. By finding the cause I have completely erased one problem I had for 15 years that MDs would never have bothered to figure out. You are not alone at all in your frustration. I still have a skin problem that probably just needs 3 weeks of antibiotics, but I am so mad about having to pay for previous visits and the nurse apparently not even knowing how to take a sample properly to send off, and then getting stuck with a $50 bill for the lab fees that insurance didnprofessionals.

Thanks [2007-09-07]
Unfortunately, we're not sure at this point what is causing the pain. The rheumatologist think it may be a metabolic muscle disease, but that requires a muscle biopsy to definitely diagnose (which I'll have in the near future). I did some research last weekend on county/state assistance, but I'm afraid without a diagnosis I may not qualify??

Tell me you are not paying for this? [2007-04-24]
Please tell me you are not subscribing and paying for that fibromyalgia coalition newletter? I'm not trying to offend you by saying this, so please don't take it that way, but from your questions you sound very new to FMS to me. Are you? Generally, when people are first dx'd or have very limited/mild FMS, they ask questions about alternative therapies, etc. as that's usually the first thing people do when they are diagnosed is try to find something/anything that may help and will be sucked into things like the fibro coalition that offer cures or illness reversals which are impossible! Don't get me wrong, I'm not calling you ignorant or bad or anything negative for wanting to find something that will help. I think it's very important to research any illness you have, but you have to be very careful, especially with something like FMS since there are so many people out there misdiagnosed because they have an occasional ache/pain, and soem doctor wants to label them with a disease (when they actually don't have FMS at all), so sure a supplement might cure something they never had!More importantly, there are many, many people out there preying on the people who really do have FMS and are in pain and desperate! Most of these institutes/websites/treatmentcenters, etc, if you really look, have hidden agendas, such as selling supplements, tapes, books, etc., all of which for the most part any way, are useless and a waste of money! The fibro coalition is a waste of money and a waste of your time and effort reading it! It is full of misinformation and really nothing but hype about reversing FMS, treating root causes, etc. They have multiple sponsers that give them money to advertise on their site as well, all of which are preying upon sick people trying to sell supplements, books, CDs, etc to cure and/or treat FMS. Supplements do not cure or treat FMS to any significant degree. Sure things like calcium and magnesium help with bone strength and muscle cramping, and obviously vitamins do not hurt you and are good for you. However, again, these do not cure anything other than a vitamin deficiency. If someone truly has FMS, a special blend of vitamins and minerals in an expensive, pretty package is not going to take away the pain, fatigue, etc. or cure FMS. It's just going to empty your wallet! I do take a few specific vitamins (not to cure or treat my FMS but calcium as any woman should probably take this, as well as a multivamin, again as most people with any illness or even healthy people usually take). Also, if I'm getting specific cramping, I may take magnesium as that does help. However, any of these specific vitamins can be bought at Walmart or a drug store seperately for much cheaper, and you can pick and choose what you feel is right for you without being called some kind of fibro cure/treatment, tripling the cost! As somone who has had incredibly severe FMS for years, I'm just trying to warn someone who is new to this. In the beginning, especially since I had/have it so severe at a very young age (dxd in early 20s and 30 now), I tried everything and wanted so badly to believe all of the false hope and promises by some of these people! I researched everything and would latch onto any little hope these quacks would give me, trying every new mineral, vitamin, and worthless treatment a doctor would recommend. All this did was waste money, time, and effort until I finally realized that these people are just trying to get rich. I have now just faced the facts that there is no cure/reversal, and I control the symptoms the best I can. I'm not like most of you unfortunately. I do not have flares and periods where there is any type of remission at all. I have constant, severe pain 24/7/365, and also different from most of you is that it is progressing as the years go by. At my relatively young age, I have not known a pain free day in over 10 years, not a single one. I've become a 30 year old stuck in the body of a 90 year old. I have days I'm hardle able to walk and am now about 75% limited in all activities, and this is on chronic opiate therapy of a 50-mcg fentanyl patch, along with anywhere from six to ten 5-mg OxyIR tablets, and a multitude of different muscle relaxants each day. Without the meds I'd be unable to do the limited things I can do and would be climbing the walls/suicidal with the pain. I hope I did not offend anyone here and apologize for the rambling. It just really upsets me to see someone giving any money, support, or attention in any way to these organizations. companies, etc. like this. that are selling and advertising false hope and sending out misinformation to whoever signs up for it! Itnonsick public who are just trying to help themselves or their families/friends to feel better. So, please just be very careful who you deal with and what you waste your money/effort on for your own financial and emotional health. I'd take financial devastation over dashed hope any day.

How did you convince your that [2007-04-09]
Hubby says you haven I was at the doctor I had all of them. I am not aware that there is any other kind of diagnosis. The doctor said I have fibromyalgia. It is the general thinking of my family that when you are tired you can just push yourself so that you can finish the day out. You won I have been tired too and have lived to survive it. I have suggested that he research it on the internet and read up on it or read magazine articles about families that were in denial of anything as well and were finally convinced there is something to it.