Disaboom autoimmunity - All Comments

Re: Polyarthralgia & Fibromyalgia

Charlotte — Tue, 30 Dec 2008 12:58:24 GMT

Sister, I feel your pain. Had a hard fall two and a half weeks ago. Have suffered from osteoarthritis for a long time. Called the nurseline tonight as I have been waking in the night in generalized pain for about two weeks. Tonight I was crying and this scared me as I have a very high pain tolerance. I have been tested for rheumatoid factors as well as lupus and came up negative for these. I have been instructed to see my doctor TODAY. How long have you been living with chronic pain? Thanks.

Re: Polyarthralgia & Fibromyalgia

Midge — Thu, 11 Dec 2008 22:28:40 GMT

Hi, Mike. Life can suck at times. I feel good today, but that might change. I can relate to feeling like you need to go back to bed. I have a degenerative brain disease, very much like MS. Some days I wake up and wish I hadn't. Other days I wake up and can get up and function. Now that I use a wheelchair at least I can get around my house. I had a freind with fibromyalgia. Bless her, she was in such pain, it hurt me just see her because there was nothing I could do to help. She finally gave up and killed herself. She just couldn't take the pain any longer, and her doctors kept telling her they were doing all they could do. I'm glad that we have this site to be able to communicate with others who really understand. Thanks for allowing me to vent. Midge

Re: Polyarthralgia & Fibromyalgia

Raj — Thu, 11 Dec 2008 10:13:18 GMT

A few months ago I was down with viral fever, and also had a bronchitis attack. Though the fever came down, my bronchitis took a while to be controlled. I am still on medication for bronchitis, since it has been recurring for some time now, and the doctor advised me to continue the medication for atleast 3 more months. After the viral fever attack, I started getting pain in my joints, lower back, limbs, finger joints, etc. And I would have irritation in the eyes even when I have just started my day after 6-7 hour sleep (I never get sleep before midnight, that's another problem because my sleep pattern got changed since last 2 years), and have not watched TV or worked at computer. Sometimes the (muscle & bone) pain is severe, walking is difficult, and basic movement to type on keyboards, and using a mouse also produce a kind of irritable (though not severe) pain. After working at the terminal for an hour or so, I find it tough to continue. My doc's diagnosis was that this is polyarthralgia and myalgia. He prescribed Etova 200, for a week. During this period the pain intensity was reduced but returned soon after the course is over. When I consulted the doctor, he says 'you ignore it' or take the same tab when the pain is severe. Most of the time the pain simply is irritating and makes it tough to do even small tasks. Lifting a plate, a water mug, using a nail cutter, etc become tough tasks. I noticed some red rash on my hands which appear (and stay for some time, about 30 minutes, and then disappear) when I lift small weights or press my hand on the bed while getting up etc. The doctor did not take any cognizance of this input. He ignores it! During this treatment cycle, I have not been able to work. I am not sure how long I can continue in this manner. I looked at the comments by freedomschild, Connie, and Sushiana. I am not sure how long my treatment will go on. The doc says it could take about 6 months to recover. He is saying you continue with your routine. But I find it tough. I am able to take care of my basic activities. I find sitting and working for 6-8 hours daily difficult. I am not sure what to do next. Is there no cure for this polyarthralgia and myalgia? The doctors talk of pain management not cure. Is this going to be life long? If so, will the pain levels remain same or worsen? In India, we do not have any SS benefits. I am not sure what will happen if this problem continues and affects my work life further and the employer is to decide (already I have been off work for over 40 days) that I can't be of much use to them. Is there any alternate therapy available in Homeopathy / Ayurveda / Accupuncture -accupressure? I would love to have your feedback. Thanks in advance, Raj

Re: Polyarthralgia & Fibromyalgia

sushiana — Thu, 20 Nov 2008 20:43:21 GMT

Re Mike's comments, I experience constant pain and frequent fatigue due to my fibromyalgia. I also have bipolar disorder and cycle rapidly. To date, I have not found consistent relief from any medications, for either disability. My fibromyalgia diagnosis came in 1991 after a fall on the ice; my bipolar diagnosis came in 1985 though I believe the disorder has been with me since grade school. In March of 2007 all my symptoms escalated and I've been unable to work since that time. I've been a social worker for more than 30 years, and truly miss my work. Being unable to work has been the most devastating part of my entire journey. I was working toward my Ph.D. in Human Services but had to leave school because of my pain and exhaustion and inability to concentrate and remember. I'm also unable fully to participate in activities with my partner, my son, and my grandchildren because of the pain and fatigue. My credit is shot because when I became disabled I lost my income. Now that I receive SSDI, my income is still quite low--I was making about $50K, now I receive about $12K yearly. All these aspects combined create even more depression, stress, pain, and so forth. However, for me, there is a light ahead. I have returned to school, though in a different field. I am now studying toward my Doctorate in Metaphysical Psychology. In late spring or early summer of 2009 I will receive my Practitioner's Certificate as well as my Ordination as a Metaphysical Minister. About six to nine months after that, I will receive my Mpsy.D. My hope is to establish a church and later, to establish a nonprofit, transitional housing program for single parents, both male and female, who are trying to get back on their feet after recovering from substance abuse. There is hope for employment and for a fulfilling life, but it takes introspection and reassessment, and a willingness to change. I'm not always "up" and positive and yes, life sucks at times, but the one thing that is always there is hope. Spirituality is important, and daily affirmations and meditation help, too. Namaste, Sushiana

Re: Autoimmunity and life

jamie — Mon, 13 Oct 2008 06:25:04 GMT

Hello, my name is Jamie. I am "blessed" with RA, OA, and Sjogrenes Syndrome. I have been unable to work for the last two months due to overwhelming fatigue and one flare after another. I am on Enbrel, Methotrexate, Folc acid, and Prednisone (as needed). My career as a nurse is now gone. I think it might be time for me to start disability paperwork but I am not sure if I will qualify. Any suggestions or input would be great.

Re: Hello from San Diego

J.T. Morgan — Fri, 10 Oct 2008 03:22:35 GMT

Hi Carol: I am new to this site and saw your comments. I wanted to share some information with you that you can research. Cancer occurs when cells grow out of control. This can happen with immune system cells. Today research continues to bring to light the importance of the benefits of fucoidan added to our diets. From the ocean comes a super nutrient that has prompted all this research. Today over 750 independt studies published on the national medical libary web base: http://www.pubmed.org. Many of our problems is directly related to nutrition or rather a lack of. I have a web sight that can give you some information or you can e-mail me and I can send you some information in the mail. My web site is: http://www.limubusiness.com Let me know what you find. Sincerely J.T.

Re: Autoimmunity and life

CarolMiller — Sat, 27 Sep 2008 23:52:31 GMT

Hi as you can see my name is carol miller. I have sjogrens syndrome, and fibromyalgia. I have a difficult time with everything. I still travel but I dont drive to much anymore. The only place I really do drive is around the corner to family dollar. My husband bless his heart does just about everything for me. I have had this for about seven years. I can tell you that I am really really tired of it. I wish there was a cure for it. I am depressed all the time I am on meds for that. But I sill get very depressed. thank you for reading this it really means alot to me.

Re: Polyarthralgia & Fibromyalgia

Connie — Sat, 27 Sep 2008 13:43:10 GMT

OMG! It is like I wrote "Mike's" blog myself!!! I am so sick and tired of Doctor's judging me by my looks and not my condition! I even had one Dr. say "So, is there anything I can see?" What an ass. Unless she had x-ray vision and could see tissue or nerve damage.....NO!!! Or, people saying things like "live with it" or "I can't afford to get sick so, I 'would' just ignore it". Most people don't acknowledge what you have as it might take too much of their time and energy. That's fine but don't discredit or label me in the meantime! They can only feel it if they have lived it! One day, it'll happen to them and they'll expect the whole world to stop...because it's all about 'them'. Hmmm. I am at a stand-still as NO ONE seems to know why my hands ache all day and night. Nor will they go out of their way to find out why or send me on to another specialist. Because they feel threatened by them, I guess. Too bad, get over it and find out what the hell is wrong with me! The Dr's also won't take another Dr's diagnosis....how ridiculous is that! If they didn't come up with it themselves...it is doubtable. Yet, none of them want to be the first one that said it. So....back to square one! Bunch of hypocrites! One Dr said I had Fibro and no one else will acknowledge it...what the heck?I had 18/18 tender points. Dahh! Not that I'm excited about that diagnoses but, at least it was a diagnoses. Somewhere to start. I want my hands back....and I want my life back. I'm suffering and so is my daughter and husband and no one gives a care....what is wrong with the medical field. I think the only people that think that doctors are fantastic are....doctors! Cause, what have you done for me lately??? Sorry, just had to vent! I can't do my daily things nor can I do the things I used to do. I'm 45 next week and I feel like an invalid. What will happen by the time I'm 60? Every week it gets worse. Debilitating and frustrating not to mention the pain. Hope they pay for a public health nurse 24/7 because the rate I'm going, I should need one in about a year. I believe in being proactive not reactive. I wish the medical practice would get on board. I call it a practice as....if they knew everything that they think they do....it wouldn't be called a 'practice' would it!!! LOL

re: Autoimmunity and life

DeafnOkay — Fri, 06 Jun 2008 22:33:52 GMT

Hello,

Looks like this blog could use alittle life! OK PEOPLE!! HUP TWO!!

I'm a autoimmune person who has seen many things change because of my illness, but certainly, not all to the negative. In fact, most to the positive, though many people don't get it when I say that. They say,"How can you possible be happy about becoming deaf? Or, deal with osteo from prednisone? Or, constantly battle with insurance companies, med bills, etc?" Well, such is life? If it's not one thing, I have learn, it's another. Most people have some "nasty little health secret" that they don't discuss until they find out your a part of the club.

I have a very rare autoimmune disease, dx'ed in 1998. I take HUGE amounts of prednisone every day, which is a major drag but it keeps me alive. I'm currently on disability, but working towards a degree in a career that will give me the ability to be self employed, as well as control my schedule. It will take a few years to get "edjumakated", but I'm looking forward to the work when finished.

There are many things we can discuss here...so take a few moments and jot down your thoughts folks! Love to have some good, grind it, conversations on health care, how you cope with the changes, etc.

Your Auto-Buddy,

DeafnOkay

re: High cortisol levels and autoimmune problems

DeafnOkay — Fri, 06 Jun 2008 22:24:10 GMT

Hi Lana,

Interesting about the Corto spikes. Normally, Cortiosteroid is used to control inflammation in disease like SLE, meaning having an larger amount should be keeping disease under control. I'd go ahead and have the test that checks to see if you have an adrenal tumor. I'd imagine it would be a CT scan, and that's about it. If it is a tumor, it might just solve your problems. Many tumors are benign (not speading) growths that can be removed without worry.

For information about corticosteroids, I'd recommend Coping With Prednisone and Other Cortisone-Related Medicines : It May Work Miracles, but How Do You Handle the Side Effects? by Eugenia Zukerman and Julie R. Ingelfinger. Often available at your local library, this book gives you the science behind this hormome system. Yours may be occuring naturally, but what you find in this book will help explain it. I'm not sold on their "diet" which looks more like evil deprivation to me, but then again, Eugenia only took steroids for 10 months. I'm going on 10 years!

Hope this helps...

re: Polyarthralgia & Fibromyalgia

freedomschild — Tue, 03 Jun 2008 06:52:05 GMT

hi, I do understand what you are describing. I have lived in Chronic Pain for 40 yrs.--the best years of my life. But then I think of people born with some kind of affliction who never know anything but that. Depression seems to go hand & hand with CP (though I think there is a genetic marker as well) I have TMJ (the big detonator of a life I yearned to live)and, have been diagnosed with Fibromyalgia (when RA was thought the culprit). Always more drugs. I tried to stop all medications once about 3 yrs. ago and wound up in the hospital with a seizure that wiped my memory! So, don't anyone go into a rapid detox unless it is supervised! However, that is like me. Want to get something accomplished & don't want to wait around until somebody else gets to it. Life is filled with frustrations and sadness; but it also filled with Beauty and gladness. Family and friends can make all the difference -- or not. Depends upon how tired they are of hearing how you are doing/or not doing. I just stay to myself now, having learned to entertain myself with artistic pursuits. I do nag myself out the door for a walk or get into the pool for some exercises--best form of exercise for joint problems--no weight bearing. I don't know if we are responsible for our autoimmune diseases by the hormones they put in chickens/cows or how they handle other food stuffs. I know there were not this many types of diseases when I was growing up. It is something that is being put into the growth of animals, even our vegetables. Something changed.

I was glad to read your blog, Mike. We do need to hang tight with one another as nobody else is going to ever be able to understand what we go through, and I don't say that as a put down. It's just that if you haven't"walked in the shoes" sort of thing, you can't know. Best to talk about it with one whose treading along the same path.

Take care, Wings

re: Autoimmunity is back!

aniamalover — Fri, 25 Apr 2008 08:30:30 GMT

hi i have fms

my name here is aniamalover

im new to this site

re: Autoimmunity is back!

nevadagal — Thu, 24 Apr 2008 22:21:54 GMT

OK - I have MS. This is a shitty auto-immune disease that has been taking ove my CNS & really screwing up my life.

re: Illness & Natural Medication

Mike — Sat, 19 Apr 2008 19:14:04 GMT

I take the meds recommended to me by my Dr, I would never not take them. I would not put this information on here if I felt it did not work, I know some people are suspicious of taking food supplements but it has made a difference to my health.

As for the allegations and the fine I can't answer that one as here in the UK I have not heard anything, but it was never sold to me as something that would cure me, only that it provides the body with what the body needs to help itself.

I have a friend that is dead set against this product, I think mainly because of the way it is sold. But as I say to him it’s your choice not to take it just as its mine to take it.

There is no doubt about it, the product is sold as life’s elixir, but I tried it and it made some difference to me, I have heard of others that it done nothing for them.

We should always follow our Dr’s guidance with taking our meds.

I appreciate your concern and your comment.

Mike

re: Illness & Natural Medication

Lieslmcq — Sat, 19 Apr 2008 17:06:35 GMT

WARNING:

Ambrotose is made by a company that is located outside of Dallas (where I live) and it has been in the news a lot in the past two years. Almost one month ago today they settled a class action suit against them for $11.25 million. The Texas Attorney General has also charged the company with unlawful, misleading sales practices. The unlawful and misleading part refers to the fact that they make claims about their products (Ambrotose being the main one) that ARE NOT TRUE. It is extremely dangerous to take these products as there is no oversight to regulate their ingredients.

I know diabetes sucks! my husband has it. Please tell me you're not only relying on "natural" products to treat it? Either way, I wish you luck.

Liesl