Do you have a local support group

Have you tried some of the online support groups? [2008-08-29]
You sound like you are doing everything right. You have so many autoimmune disorders so may be why it is so severe. I will leave this web site with you. A lot of info there on diet, alot of people receiving holistic care as well. blessings,

Do you have a local support group? [2008-03-28]
xx

Crippling RA [2008-08-16]
Hi there, I just found this board. I know there was one a few years ago but happy to see that it is back. I have crippling RA and secondary conditions... active, reacitve, daily pain, all of the above. Many deformities which started in about the 8th year of the disease. It is now my 13th year. I finally scheduled an appt for disability on Monday coming. I just did not want to give in but I am not able to keep a job. I am on medical leave from one inhouse joband work at home part-time on another, just wondering when will they tell me I am too unpredictable and cancel the contract.I really hope that doesn I just went through that with the last job. I have been hospitalized 6 times this year. Both hands are crippled with z-deformities, boutonnere I just type around it but obviously much slower thanI need to be for this job and definitely slower than the employer would like me to be. I made the mistake of thinking since this adesk job, then a disabled person should be able to do it. If anyone else is going through the things I have mentioned above, please feel free to talk to me about any of it. I would love to hear from you and just hope we can support each other and/or come up with ways to still stay employed. blessings to all going through the variouspainful conditions. MT in GA RA 13 years andsecondary conditions withsicca symptoms, bone on bone hips, etc.

I hope you have better luck than I did. sm [2008-08-13]
I had 3 ESIs and 3 facet injections. None worked one iota. I worked at the hosp. so the pain doc was nice and did the 3rd facet. The next thing was a foraminotomy, which barely touched my 90YO neck at age 35. The neurosurgeon required a myelogram. Having typed them, it didn't dawn on me how big a mistake I'd made until I got a dural tear from one of my beloved Radiologists. He was just sick about it, as were the others in the group, as they said it happens about once a year. I ended up with chemical meningitis, which required three blood patches! It was awful! A year later I had a fusion and my vocal cord was paralyzed! 2 Medrol Dosepaks did nothing. About 2-3 years later my voice returned to normal. It sounded like I'd been inhaling helium. The good side of this is that this is all in the past tense. I still get the paresthesias in one arm, but compared to what I once had that seems like nothing. Either way, there's no perfect answer. I hope your situation works out well.

I may be out on a limb here [2008-07-25]
But there's a possibility that you have a simple fungal/bacterial infection of your skin. Try this ... purchase Nizoral shampoo from your local store. Use it like a body wash. If the itching is minimized, that's a clue. You might speak with your doctor about getting an Epipen. Another link: http://ezinearticles.com/?Use-of-Colloidal-Silver-in-Treatment-of-Skin-Rashid=520525

Crissy, I just posted about FBM..sm [2008-07-23]
I also forgot in my original post, i have been on Omega fatty acids for a long time, but it does not seem to be helping me. My doctor and the rheumatologist I saw, well, he told me that my doctor was doign a great job of treating me and there was really nothing he would do differently. My medication regimen for this awful thing: Cymbalta 60 mg once a day Percocet 10/650 mg 1 twice daily. Xanax 1 mg 3 times a day Lortab and Ultram for breakthru pain. I take other vitamins and I also take magnesium. As you can see, I am a walking dealer for a drug addict and i HATE IT....but I hate the pain more. Stretching exercises seem to help a GREAT deal and I do them a few times during the day. I also have a myspace page and I have met WONDERFUL people who suffer from FBM, joined support groups online as there aren Everyday, we send each others messages, we chat on IM, some of use even exchanged phone numbers. These gals are wonderful and some have other conditions in addition to FBM and they are the strongest women I know. If you would like to find out more about the groups I belong to, please feel free to email me. Good luck with everything. I know what you are going through.

MS anyone [2008-04-23]
I am new to the site. I have been a Transcriptionist for about 20+ years, but the last 10 I have been home, just doing some clinic typing for radiology or whatever. My husband left us (my 3 kids and I) about 7 weeks ago and now I have to go back to work full time. I was diagnosed with MS in 2007, probably have had for several years prior, but diagnosis takesa while. My question is this, does anybody else have MS and what do you do during your day to help you,. I am kind of afraid of sitting too much, so I figure I will have to get up frequently. Anyway, just looking for support I guess. I see quite a few people with FM and Iknow that MS and FM mimmic each other a lot.I am wondering if maybe a specific chair helps with nerve or muscle pain? Thanksin advance for the input.

spoon theory [2008-04-23]
someone sent me a link to the spoon theory right after I was diagnosed, and I have sent it to many others since then. It truly is a good way to represent how we feel to people.Even my stbx doesnt get it. He has taken no role in trying to learn about MS or anything else, which is probably why itmakes it so much easier for him to walk away. Anyway, thanks for the support, as I am sure you know, we all need it. I hope you are well. I have a coup9le of friends using Provigil and they love it too! I actually have an appointment with my neuro today, maybe I will ask for it! Although I am sure my insurance won Oh wel, thats what we pay themthe big bucks for right?

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

Listen to this one about Cipro [2008-01-07]
I took Cipro off and on many years ago due to urinary tract infections and had no problem with it. The last time, and I do mean the last time, I took it was approximately 14 years ago. I believe it was the second day of dosing that I became extremely paranoid. I went to a local grocery store to buy groceries. I felt as if everyone was staring at me and talking about me. I paid for my groceries and the cashier gave me mychange, which I did not realize (for some odd reason). Now, I am not a confrontational person at all. I began arguing with the cashier that she did not give me my change back, all the while holding the money in my hand. I caused such a scene. I knew the manager as he went to our church. He came over and asked me what was wrong. I told him the cashier had not given me my change and that she was arguing with me that she had. He reached over and took the change out of my hand and gave it to me. Needless to say, I did not go to that grocery store for a while, as I was so embarrassed. I went home and called the emergency room as I had a feeling it was the Cipro, whatelse could it have been. The nurse told me paranoia can be a side effect. It is now on my chartthat I am allergic to Cipro.It was just horrible.

Cipro and fibro [2008-01-07]
I notified my local fibromyalgia coalition here and they are writing an article about what these drugs do, i.e. causing and worsening fibro. Anyone affected by these drugs needs to notify the FDA. I did and they sent me a letter saying they would investigate it. Some people have sued for the side effects of Levaquin. I will never take any fluoros again. My friend was completely shut down from a month of these drugs with no reversal.

diabetes diet [2007-11-11]
Maybe you could get a diet booklet from a nutritionist at your local hospital or doctor's office. Just a thought.

I feel your pain but honestly, I [2007-09-29]
do not tell anyone about my problems. Not even my husband. I had a thyroid biopsy the other year and did not tell him because he gets all bent out of shape and thinks I have cancer all the time, so I had my DILyou have cancer, I know you do. So instead of being supportive, he made me feel worse.) Of course, it was not cancer, but this is the reason I do not tell him when I have a problem. I wait until I know the results of any test before I tell him. Sorry to go off on a different subject and don

Sorry to keep whining.... [2007-09-13]
but I need someone to vent/whine to!! I posted below about dealing with an illness that is so far a mystery (going for muscle biopsy in a few weeks). My mother, who has been my support decided that she wanted to travel and is leaving in a few weeks. Today, I just feel very down. I feel like I bend over backwards to help people and be there for people (friends and family) and when I need it, everyone has their own lives to deal with and I Granted, I have been dealing with this illness for about 3 years, but it is progressively getting worse. I try not to talk about it very much andI try not to ask for help unless I reallyneed it(and I mostly ask my mom) Am I asking too much from people? Honest answers please. Do I need to just suck it up and try to deal with it the best I can on my own and to h*ll with everyone else?

Some helpful ideas [2007-09-07]
Speaking from someone who has disabilities, pains and issues, it sure sounds like you might be qualified for SSDI (Soc Sec Disability Income) plus MediCare plus County or State paid-for in-home assistance. Check with county/state in-home assistance programs you might be eligible for. Another thought: Anyone in your local area who could be paid a nominal fee to do simple light housekeeping and errands/driving for you? (high school student, retired person?). Sounds like fibromyalgia/CFS? Am I close? Best wishes.

The trigger point test for fibro [2007-08-20]
is the only one I know of. The docs can poke and prod all day long and it doesn't hurt, but make me walk around the block and I'm in agony. I should also mention that I used to be pretty active - went to the gym and stuff. I don't think there is a test for CFS and I'm a little afraid that is what the doctors are going to say I have since they can't find anything else. I am currently taking classes at the local college and am having a horrible time trying to get them to understand that I can't physically get to campus. With all the controversy about CFS, I'm afraid that would make the fight even harder. Thanks for the reply. :)

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.

Thanks for the reply - [2007-03-26]
ityou look okay to the normal eye, but inside you're dying or feel that way! I live in Louisiana and so once the summer gets here I am planning on doing some water aerobics in our pool to help with stretching, etc. I also am thankful that I am not the primary source of income because I can't imagine having to work 40+ hours to provide for myself and a family - that would do me in I think. I've not really lookoed into the disability thing (at least not yet)...kind of feel that if I did that I would be 'giving in' to the illness and I'm not ready to do that yet - I just hope that tomorrow will be a better day - I am glad that this board is here and I have somewhere to find support and know that I am not alone. I hope you get your meds adjusted and everything works out for you at your visit and thanks for the info on the pain clinic - at least now I know where I can seek further help when my pain gets to that point. I hope you have a good week and your pain gets relieved soon!