Author |
Message |
Mameblanche
Member
08-24-2002
| Wednesday, October 17, 2007 - 9:02 am
Thx Kar, I really appreciate your understanding. I can feel a lot of emotions roiling around right now, as well as all the physical stuff.
|
Karuuna
Board Administrator
08-31-2000
| Wednesday, October 17, 2007 - 9:22 am
We all go through bad times, hon. And then we end up being hard on ourselves for not sucking up and dealing. But really, the best thing is just to be as kind to yourself as you would to someone else. So love on yourself today, so you can feel better. (((( gentle hugs ))))
|
Mameblanche
Member
08-24-2002
| Wednesday, October 17, 2007 - 9:46 am
Yup Kar, I'm equally as good - if not better at the being hard on myself part as the other part. That's what mostly roiling around in my brain. I don't need others to pound on me I do a bang-up job on myself. LOL.
|
Karuuna
Board Administrator
08-31-2000
| Wednesday, October 17, 2007 - 11:07 am
(((( Mame )))) Be nice to yourself! That's an order! Update on me: After having a horrible pain and sleep period of about 4-6 weeks, the pain has mostly subsided. I've given up on prescrip meds for awhile, letting my body cleanse out. The Corvalen/magnesium mix is working really really well for me. I think more clearly, and have more energy all day long. I'm not sure if it's doing anything for the muscle spasms. I took it for several weeks without any relief. But the last few days I have had fewer spasms. I have also added a bit of potassium to that concoction. Geez, I feel like a mad scientist! I do have a suspicion that the latest med was actually making the spasms worse, since when I decided to wean off it, the spasms slowed down. Really sucks if that's the case, that the med that was supposed to make me better was making me worse! Now, if I could just solve the sleep issue, I'd be a happy camper!
|
Mameblanche
Member
08-24-2002
| Wednesday, October 17, 2007 - 11:47 am
((((((Kar)))))) Sleep deprivation is NOT a good thing. I do hope you get it sorted out sooner rather than later. Glad your pains have subsided substantially tho, that's wonderful news. 
|
Kstme
Member
08-14-2000
| Wednesday, October 17, 2007 - 4:37 pm
{{{{Mame, Kar and ALL you need some gentle}}}} In the last few months I have been having some really horrible outward affects of the Lupus and Fibro appear. I NEVER believed in my wildest imagination how devastating these diseases can be to your total immune system. Yes, I did and I do know, but until they hit as they have me, I didn't want to believe. I have been to the doctors and because I can't take any stress relievers, I need to work through the stress on my own. I have been told that, basically, my immune system is in the toilet. I don't want to go into 'what's' happened, but I really want to find a large room and hide there. I used to think I was fortunate that the Lupus had only attacked my eyes, but you forget that the skin is also an organ and the Lupus has launched nuclear warfare. Done ranting...
|
Pamy
Member
01-02-2002
| Wednesday, October 17, 2007 - 7:13 pm
Mame, I am sorry you are having a tough time, dont worry about the job, you take care of yourself. xoxoxoxoxo
|
Pamy
Member
01-02-2002
| Wednesday, October 17, 2007 - 7:14 pm
Kar, I think that concocktion is wking for me too....I noticed big difference when I forgot to take it for 2 days in row
|
Pamy
Member
01-02-2002
| Wednesday, October 17, 2007 - 7:16 pm
(((kstme))) you rant all ya want! I think it helps!!! I am sad that you are having to deal with all this. xoxoxoxo
|
Kstme
Member
08-14-2000
| Wednesday, October 17, 2007 - 8:01 pm
{{{{Pamy}}}}Thank you! You are such a dear. I was so overwhelmed with information from my dermatologist this morning that it may take a few days for it to fully sink in. The truly amazing thing...the psoriasis I have been plagued with for the last 20 years is healing, in most areas. Still have some on my head and my finger nails are a disintegrated mess, which is embarrassing beyond belief. The reason...the cells are trying this new attack. One which is proving most successful for them. There is no cure, no magic potion that I can take. The doc is going to try some very strong steroid lotion, but doesn't think this will work. It's very disheartening when you know what's going to happen and it does. A doctor shaking his head and telling you that he's sorry, you're screwed. We all live with our pain, aching muscles, tendons, ligaments and all that stuff. We do it cause we have to, but I resent it when the body decides to create more crapola without consultation. Pamy, thank you for letting me rant...
|
Mameblanche
Member
08-24-2002
| Thursday, October 18, 2007 - 6:50 am
((((Pamy & Kstme))))
|
Karuuna
Board Administrator
08-31-2000
| Thursday, October 18, 2007 - 8:32 am
(((( Kstme )))) I really do know what you mean. It's agonizing emotionally when your body just keeps turning on you. Pamy, I'm glad you're having some success with the Corvalen. I ran out last week and felt like crap for a few days too. That's what clarified it for me. It really does make a difference! ETA: I took triple the normal dose of some OTC sleep aid last night and slept iike a baby!
|
Mameblanche
Member
08-24-2002
| Thursday, October 18, 2007 - 9:57 am
On the phone today, Twiggyish asked me to repost my published article about Fibro for her, so here it is folks: COPING WITH FIBROMYALGIA By JSD It’s disheartening being saddled with an illness that is often referred to as a ‘garbage-can’ syndrome by the medical community. I have Fibromyalgia, sometimes called fibro, sometimes FM. Let me cut to the chase - there is no cure. You know that run down, low energy, achy feeling you get when you come down with the flu. That’s me most days. A few of the overall symptoms include chronic muscle pain, difficulty sleeping, constant fatigue, gastrointestinal complaints, and migraines. Some of the doozies are temperature sensitivity, and environmental sensitivity (to light, noise, odours, taste, and weather fluctuations.) My personal nemesis is a cognitive disorder commonly referred to as fibro-fog, which pops up mostly under stressful situations. Fibro-fog features frequent short-term memory lapses (doubly embarrassing in my line of work) and being easily overwhelmed. I’ve dubbed it cheese-brain, because I picture my memory as a piece of Swiss cheese, with holes in it. Here is where the frustration comes into play. It took at least a couple of years before I found someone who could tell me what the constant pain and fatigue were all about. It seems like one third of the medical community completely discounts FM as a haven for hypochondriacs, and one third tend to dump their patients into this category when they are stumped, (ergo the garbage can nickname), while one third are truly knowledgeable about this complex syndrome. It’s difficult enough not feeling up to par most of the time, but to have something that often takes years to find a correct diagnosis, adds enormously to the misery. One day, in the Fibromyalgia and Chronic Pain newsgroup, Iris Weverman, RPT, posted her reviews of several books on the subject, and indicated that her physiotherapy clinic was located in Toronto. I was lucky. This was the Internet and she could just as easily have been based in Katmandu. Her credentials include speaking engagements on the topics of Chronic Pain, Fibro, and Myofascial Pain Syndromes. At my first appointment, she immediately did the ‘tender point test’, (where you must have pain in at least 11 out of 18 specific sites on the body), which unfortunately I passed with flying colours. Since this is mostly a diagnosis of exclusion, (meaning after everything else is ruled out, then chances are you have this) Fibromyalgia is often mistaken for illnesses with similar symptons. According to Weverman, one should picture the spokes of a wheel, one spoke representing FM, one for Chronic Fatigue Syndrome, one for Lupus, and one for Multiple Sclerosis. I know of someone who for years was told she had Chronic Fatigue Syndrome. They just discovered that she really has Multiple Sclerosis. It’s a frightening situation when you have so many illnesses that mirror one another. Mind you, I’m not complaining. Over the past 4 years, since my diagnosis, I’ve grown accustomed to its vagaries, and have figured out how to live with it, on a truce-like basis, day to day. I ignore it and get on with life on my good days, and I coddle it with massage and the occasional painkiller on my really bad days. And truth to tell, some days it just pays to huddle under the covers, until I can regroup, and face the world, once again, re-energized. I don’t mind fighting Fibro. But it’s exhausting fighting smug disbelief. Although according to Iris Weverman, while eight years ago it wasn’t unusual for her peers to discredit it, research is finally beginning to prove, unequivocally, that this ‘garbage can’ disease really does exist in and of itself. Saturday, May 12th, was Fibromyalgia Day. This is a giant step in a hopeful direction. <END>
|
Twiggyish
Member
08-14-2000
| Thursday, October 18, 2007 - 2:57 pm
Thank you Mame. It sounds awful. I just wish they had a cure for it.
|
Mameblanche
Member
08-24-2002
| Thursday, October 18, 2007 - 7:29 pm
My article was published in 2000. Since then some folks say that they have been cured, so I guess it depends on each individual what works or doesn't for them. I've learned to live with it for the most part.
|
Kstme
Member
08-14-2000
| Thursday, October 18, 2007 - 9:20 pm
Mame, thank you for posting the article again. It's excellent!
|
Sage
Member
07-20-2000
| Friday, October 19, 2007 - 4:49 am
Mame, thanks for posting that. I have tender points that usually don't hurt when touched, but they are the places I hurt most of the time. The pain seems to always be underlying, like a score of 1 - 2 on the pain chart. I think my body has become used to the pain which has raised my pain tolerance level. I think the pain is what causes such great fatigue for me. Since moving to western WA (Seattle area) a couple of weeks ago, I've been having more weather related aches and pains, mostly due, I think, to the wet climate and constant weather changes. After the move, I spent nearly a week in bed just trying to recharge. Today, I ache, and so on it goes... blech.
|
Kstme
Member
08-14-2000
| Friday, October 19, 2007 - 10:38 am
Sage, it was the humidity and rain that drove me out of Washington. It is better in the desert. Everytime I, seriously, think of moving back, I call a friend who has this and can't move. After a few minutes of talking, I know a move back is impossible. I am so sorry you're hurting! {{{{Sage}}}}
|
Mameblanche
Member
08-24-2002
| Friday, October 19, 2007 - 12:09 pm
((((Sage)))) honey I'm so sorry you are hurting too! I agree that the pain is what causes the fatigue most of the time. Its so damned debilitating, eh? But I find if I am in a good headspace, I can beat it easier than if I let the blues overtake me. Which is unfortunately where I am this week.
|
Juju2bigdog
Member
10-27-2000
| Friday, October 19, 2007 - 12:32 pm
Aw, Sage, I am sorry to hear that. I hope you've got some contingency possibilities because it's gonna be like this for months and months.
|
Pamy
Member
01-02-2002
| Friday, October 19, 2007 - 7:10 pm
(((sage))) hope you feel better today
|
Sage
Member
07-20-2000
| Friday, October 19, 2007 - 7:26 pm
Thanks for the hugs. I have been so busy for the last month or so, it's been crazy, and because of it, I'm much more fatigued, and of course, pain inflicted. It all started the week before Sept 15, while still in my apartment, when Jim was offered work at my apt. complex, and I worked on making room for him and the dog in my 1 bedroom apt. I was also preparing for my daughter's wedding reception on the 15th. I worked my ass off. (I haven't even mentioned that I've taken off 25 lbs in the last few months, and I didn't even diet to lose it.) Anyway, that weekend, we discovered the deal that was offered to Jim for doing work at my apt. complex turned out to be not the deal they initially offered. It was very upsetting for both of us. There was plenty of work for him to do here, so we decided that I would make the move. For 2 weeks I worked my ass off even more packing up my stuff while Jim came back here to do work. The moving day came and all went without a hitch, but from that day, it took the following week in bed to recover. I don’t have a contingency plan, Juju, however, I am determined to make the very best of living here, as I absolutely love it. The rain isn’t bothering me as yet, but am realistic that it will get pretty old after a while. The pain has been somewhat manageable so far, and hope that the increase won’t be too much. We live in a daylight basement with lots of trees blocking the sky from view, but I told Jim a nice warm yellow color on the walls down here would make it feel sunny and warm, and indeed, it does. We are doing lots of renovations down here, and it’s getting nicer and nicer by the day. I need to find a doctor, and have been thinking of going to a naturopath to treat my fibro and possibly my diabetes. My biggest problem/concern, is that I have no insurance, so everything I have to spend on my health care comes out of my inheritance money, which I totally loathe, as I would love nothing more than to save what I have left. Sigh.
|
Sharinia
Member
09-07-2002
| Sunday, October 21, 2007 - 2:26 pm
FFF 
|
Sharinia
Member
09-07-2002
| Sunday, October 21, 2007 - 3:26 pm
Meggie, you asked me about Sea Biotics. I actually am not familiar with the product, but it looks very much like Concentrace http://www.traceminerals.com/products/drops.html I have heard of people improving with these types of products, but one concern esp long term, is that these sea based minerals are likely contaminated with heavy metals (unless they tell you otherwise). Some ppl theorize that all of the good minerals in the product will readily assist the body in detoxing any heavy metal contamination. I would guess that it could depend on a lot of things - incl. your current levels of metals and minerals. People with known heavy metal poisoning tend to not want to risk taking untested, sea based products like these. Many, if not most, people with fibro/cfs have elevated heavy metals even if they're not aware (studies have borne this out). If someone wants to give the product a shot, the ideal way to approach it imo would be to test your mineral/metals levels beforehand (which isn't a bad idea anyway) and and then 3-6 months after. There are a few ways of doing this -- hair, blood, urine and stool. You can actually test your hair without a dr, using a very respected lab in the alt med community (the same one that many nutritionists and doctors use), and it's not terribly expensive: http://www.directlabs.com/testtypes.php#hair There is some controversy btw over the accuracy of this test, as with much of alternative med. But it is commonly used by the most reputable docs in alternative med community. I truly believe in its accuracy - I've had comparable results with blood tests from a different lab, and the results are always in line with my expectations. I've also known some very smart and well educated science types who have relied on these tests while going through metal detox to monitor their metal/mineral status, and have found them tremendously helpful. If someone can't afford the testing, I think that trying these sea mineral products may still be worthwhile, but I would err on the conservative side, as most reputable alternative docs do not seem to endorse them (to my knowledge) That said, I do believe that ppl CAN be helped by these products - most of the trace elements are certainly beneficial - and good for them if they are (if that makes sense)
An excellent safe source of trace minerals and amino acids btw are wildcrafted goji berries. They are pricey but *very* health promoting.... here is where you can get them: http://www.rawfood.com/ and here's an excerpt about them Goji berries contain up to 21 trace minerals (the main ones being zinc, iron, copper, calcium, germanium, selenium, and phosphorus). Goji berries also contain vitamins B1, B2, B6, and vitamin E. Mature fruits contain about 11 mg of iron per 100 grams, beta-sisterol (an anti-inflammatory agent), linoleic acid (a fatty acid), sesquiterpenoids (cyperone, solavetivone), tetraterpenoids (zeaxanthin, physalin), and betaine (0.1%). Goji berries contain polysaccharides which fortify the immune system. A polysaccharide found in this fruit has been found to be an anti-aging secretagogue. Goji berries have been traditionally regarded as a longevity, strength-building, and potency food of the highest order. In several study groups with elderly people the berry was given once a day for 3 weeks, many beneficial results were experienced and 67% of the patients T cell transformation functions tripled and the activity of the patients white cell interleukin-2 doubled. In addition, the results showed that all the patients spirit and optimism increased significantly, appetite improved in 95% of the patients and 95% of the patients slept better.
|
Sunshyne4u
Member
06-17-2003
| Sunday, October 21, 2007 - 3:33 pm
there is no cure per say. But my specialist who lectures throughout the world says that it CAN go into Remission. yes there is HOPE. never completely give up. ** also, there are many other ways of feeling pain other than Muscular. I have got Tonsil Concretions. that is when sloughed off cells and bacteria form firm hard nodules which grow in the deep deep folds of the tonsils. Sometimes it just feels like I have 'a peeble in my shoe' discomfort, but some days like today It feels so sore. until they get infected or big enough to be popped out I have to live with the pain. I have not read this whole thread. But I want to make sure people understand that many of the symptoms of the various diseases are the same as Fibro because it IS basically the same mechanisms involved. My specialist says that it seems that Fibro / CFS seems to be started by a Viral infection. I still remember the 80s when Fibro was first mentioned to me. Then it was considered a Mental Disorder in which the physical pain was a manifistation of the Sexual abuse of childhood. Even when someone claimed that they werent abused it was suggested that they just dont remember. LOL I'm glad that MRIs and Various tests now basically Prove this condition. However, many of us will not have the spinal tap done. If there was a cure, I might consider it.
|
|