anyone out there with auto-immune/chronic pain issues before dx?
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I've heard online is overcome with orders from Japan but also here as lots of paranoid people want to stock up.Actually was in the paper this morning.
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I haven't had added salt in my diet for 18 years now - ever since a diagnosis of high blood pressure. Literally don't have salt in the house. There's enough salt in everything we eat, I just don't ADD salt. Salt has iodine in it. It would make sense that I'd be deficient in iodine! Dang it all! Figure it out just in time for a world shortage....just my friggin' luck!
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Finally! I was feeling very lonely in here before, so thanks for posting.
I have had chronic pain for the past 9 years. I have degenerative disc disease and degenerative joint disease (arthritis) of the lumbar spine, as well as some debilitating hip problems that no one can seem to DX. I guess I have just learned to live with it, since there is no treatment/ cure for me. I get 10 nerve block injections in my spine a few times a year, but they are not as helpful as in the beginning. I also cannot walk even 1/2 of a block, due to poor leg circulation, so I just don't do much...that pain cannot be controlled by any type of narcotic. I need testing to rule a variety of autoimmune diseases, but my kidneys will fail if I have any dye injected, so I just don't get any! lol
Fibro is very tough! My mother suffered for years, but did get some relief using muscle relaxers. I know another lady who gave up on the typical medications and went to a homeopath. She swears she is cured and she was pretty much crippled with it. From what I know, tailored, restrictive diets can help a lot, along with a tailored exercise plan....that is vital. I am so sorry you are dealing with this, but just keep searching for the right specialist to help you! You may have to try a few different paths for treatment, because fibro/ treatments seems to be different for everyone. I would for sure try acupuncture!
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For those that have fibro you should google hypothyroidism + fibromyalgia. Lots of interesting articles pop up regarding the connection. Hypothyroidism and adrenal fatigue can cause symptoms of fibro. Unfortunately, from what I'm reading a lot of people, particularly women, go undiagnosed with low thyroid. Usually because many doctors are still going by old standards on what "normal" levels are. WebMD says normal TSH levels are 0.4-4.5. The American Association of Clinical Endocrinologists say it is 0.3-3.04. I've read other studies that say women's TSH should be higher than 2 or you will have symptoms of hypothyroidism and fibromyalgia. (My TSH was 5.1 so no wonder I've felt like s*** for the past decade.) Of course, the other challenge is finding a doctor who knows how to treat you correctly once you are diagnosed which is where I'm at right now. They've got me on T4 meds (Synthroid) but from everything I've read that alone won't ease all the symptoms. You also need a doctor who will work with the dosage until the symptoms are eradicated, not just until your TSH is in the "normal" range. Another challenge! I'm currently being treated by my GP but am off on my quest to find someone who is extremely well informed, and open-minded, on the best way to make me symptom free. Wish me luck!
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Hi Kate- sadly, more a sign of computer trouble! But also I'm away from home for a few months as a post tx get me the heck out of here sort of vacation, and not on the computer as much- which is good! Sadly, still rushed, but I want to chime in to all this about adrenal fatigue and fibro very soon...
to all... -
Was it here we were talking about Interstitial Cystitis? If so, I'm getting tested for that on the 27th of April...under anaesthetic as it's so painful apparently. They will fill my bladder and flush it with different irritants (I believe) to see which ones cause the blood in my urine....sigh. Yet another cross to bear!
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Oh Gosh Barb, that sounds just awful. I'm so sorry! That will not be fun at all. So afterwards will you still be in pain? Ugh, well hopefully they find the cause and it is an easy and not scary fix. My goodness you must feel like you live at the doctors!
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Apparently there is NO fix!!! Just diet and pain meds. I'm already restricted with my gout diet, this one would include NO yoghurt, tea or rye bread (my breakfast!!!) and no fruit except blueberries, honeydew melon and pears!! Why can't I get the diseases where you lose weight and have to eat everything in sight????
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My goodness do you even have anything left you can eat? I have a friend who was born with only a part of her immune system and my gosh she has about everything . She has to get infusions which give her sever flu symptoms every weekend, she has the poly-ovarian syndrome, has basically no immunity, they think she has MS and had a BC scare recently. oh and her finance left her at the alter. So Barb I think between the two of you you all might have it covered on diseases and still going. She is also pretty amazing just as you are so somehow you both have this inner strenght which is admirable and inspiring. I can't begin to imagine how hard every day is for you but your humor, wit and intelligence sure shines through here and we love you all the more for your struggles!
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Thank you Stanzie! That validates the effort I put into my posts....trying to find the funny side of life. I figure there's two sides of life and I don't even want to look at the other side, except my body keeps letting me down. I have no close friends to share all this with. Can you imagine how I feel as I head to my office and staff say "Hi, how are you?" What the HECK do you say??? I say nothing, just smile and keep walking.
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barbe- I would say your efforts pay off because you put a smile on a lot of our faces out here. You always make us see the humor in all this auto-immune crap!
So I'm wondering, ladies, what color ribbon do we get for auto-immune? Multi-colored for our multiple symptoms? Seems only fair!
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I went on an MS walk a while ago and their symbol was oh what do you call it a holograph?? Anyway, it was a ribbon which changed colors - as it is an ever changing disease and it affects all sufferers differently. I think that works for all immune diseases.
Barb - I can not believe you do not have tons of friends. I'm thinking there are many who think of you as their friend. Hmm as what to say - how about" Glad to be alive"- nah too .... oh what is the word , - how about " not in excruciating pain today - glad you asked. " Hmmm.... oh let's keep thinking. " only had to take 27 pills this morning", I don't know you are good at shocking people seems like if they know what all you are going through seems like they need to be shocked a bit. My friend - she puts on a good face but I can look at her and see in her eyes how she is really doing and know whether she needs someone to talk to or not. Anyway, Barb you are fall too wonderful not to share your self with others!
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Hadley- Can definitely relate to the "part time career" thing. Great way to describe it. I feel like I have multiple bosses, too- GP, BS, PS all telling me what I should or shouldn't be doing. I need to find an endocrinologist (what's the abbreviation for them?) too since I just got DX with hypothyroidism. I've been dragging my feet dreading yet another doctor visit, charts, paperwork, etc, etc. It's starting to feel like a full time job- with no benefits! LOL!
Just curious- has anyone had any luck treating insomnia holistically? How about prescriptions? Has anything worked for you? I am desperate for a good night's sleep. I fall asleep, just can't stay asleep, and end up feeling like a 100 year old woman by morning. Any suggestions?
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Kate, get Melatonin at Walmart. They are tiny, tiny little pills. Take about 5-6 of them. You will get a natural deep sleep. They are amazing! When those stop working I use Immovane, but apparently you can't get that in the US. I don't know what the active ingredient is in it, but it may be worth looking up. I'm sure you have a US equivalent.
You have to take more Melatonin than they say. I think they start you at 3. Each pill is only 5 mgs. So you could start at 3 and work your way up.
Enjoy!! It's cheap and easy.
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barbe- Thanks! I'll try that. I know I tried it many years ago but am sure I was just taking the recommended dose which didn't work. I'll try to pick some up today. I looked up Immovane and from what I can tell it is sold under the name Lunesta here in the U.S. I think I did try that at one time but I'll have to check with my GP. I haven't been very good about keeping records on my RX's which I should have since I've been on so many!
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HI Kate - I have the same problem, though am better now that thyroid is being treated. It definately worsened under the AI's. Depletion of estrogen really impacts sleep.
I'm with Barbe. I have tried Melatonin and it has helpe me too. I dont feel like its as good as ambien but definately inexpensive, non habit forming and as we get older, our bodies make less of it. So you're really supplementing with something your body normally makes. Just not in the same quantity as it did when we were younger.
Let us know how you do.
Bevin
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So I tried the Melatonin last night. I took 3 of them. I had the weirdest night. Must have woke up every hour, had very vivid dreams (was even smelling things in my dream!), was hot yet cold and basically had a miserable night. WTH? Do I need to take more or is Melatonin not the answer for me. Last night was so horrible I'm hesitant to take them again tonight since I have to get my son off to school in the morning. I'm just so desperate for sleep!
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I have the same issues. I have discovered that even though I want to eat certain things, they set me off. It sucks. I can only have a little bit of white flour bread, french bread, whatever, or I bloat, have no energy, pain throbbing, bones crush.I have to walk, a great deal. Walking/swimming/gentle yoga helps. I have yet to remove toxic people from my life, and folks, this is the big one---we have to do it. They are hurting us, even though they don't mean it. My muscles burn constantly. I can't walk correctly. I can't feel joy most of the time. I am convinced now that I have fallen into a spiral of self destruction by proxy, by trying to be super mom, and not caring for myself, SELFISHLY. My husband is selfish--my kid, righteously selfish---why not me? It's not that we have to be "selfish" it's that we have to care for OURSELVES so we can care for others. Migraines, hip out of joint, etc., and I continue...
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I take 3 mg. melatonin for sleep, no more. It helps, but maybe too much is a bad thing.
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Does anyone just get plain ticked off that their auto-immune issues have stolen so much of their life? I am 50 years old and feel that I have felt bad more than I have felt good. I try to remember when I was a kid and I could sleep all night, wake up full of energy, play all day and never get tired. I miss those days.
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Kate - Love your new avatar - or should I say old avatar - so sweet! I take the melatonin and do what Barb does I take more than they say as the little bit doesn't help me at all. I haven't been sleeping either - like you said waking non-stop all night. Over the weekend I even took a sleeping pill ( a whole one) where normally if I take a tiny 1/4 of a 1/2 of a pill it knocks me out t the whole pill - nothing! I'm wondering what on earth is going on?? So weird.
crazykittie - sorry for all your troubles too - And toxic people - yes very very hard - I'm trying to rid some out of my life also and that is itself hard too.
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Kate, try it again. I get those weird dreams from my blood pressure medication but am so used to them that I like them. I can even SHOP in my dreams, touching and feeling things and making purchases. I wake up wishing I still had what I "bought"! Give it another chance. It may have revved you up because it works that way too. Did you take it before bed. I took mine about 1/2 hour before I wanted to fall asleep.
As for the sleeping pill, these things have a drug to wake us up too and make our heads clear. I'm surprised they worked well when cut! Most say do NOT cut. The Immovane I take will wake me up exactly 8 hours after I take it.
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I used to take Trazodone and it was wonderful! Fell asleep within minutes of taking it and sleep straight through the night without waking up once. Then, all of a sudden, it stopped working. I called the pharmacist because I thought they had given me the wrong drug, or the company had changed it in some way, but they said no. Now that I haven't taken it for about a year I'm wondering if it will start working for me again. I find most drugs I take start to not be as effective after I'm on them for awhile. My doctor has to keep upping the dose. It's like my body builds up an immunity to them. My DH is home from his trip so maybe I'll try the Melatonin again tonight. If it doesn't work he can get up with our son when I'm too tired!
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Kate
Melatonine at first can give you nightmares and vivid dreams , It did to me, I started with 3 mg and after about a week I did not have them anymore, your body ajust. After you can if you need add 1 mg per week and find your right amount. They are a bit like antidepressant in the sense that the 1rs week is the hardest then your body gets used to it. If 3mg is too strong start with a lower dose, it really works, good luck,
Welga
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Welga- Thanks! I will try that and see what happens. I think taking 3 right off the bat sent my brain into a tizzy!
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The first and last time I took Ambien, I walked out of my house! I can only take the woosie stuff...sucketh!
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CrazyKitties,
The last time I took Ambien I called my supervisor and told him that I wasn't coming to work. Well, 5 hours later (I worked nights) I showed up at work and hadn't a clue that I had talked to him. My supervisor said we had talked for 15 minutes.
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I have lupus (SLE), Graves' Disease (now hypothyroidism), fibromyalgia, neuropathy, Reynaud's, spinal stenosis and degeneration...I'm always in pain, everyday all day. I have poor sleep, headaches, and dizziness. Now BC. My life feels like it will never stop spiraling out of control.
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StaceyLynn- I know how it feels to think you can't handle just one more thing and, wouldn't you know it, one more thing comes along. It just is too much sometimes and it's hard not to say, "Why me?" I'm sorry you are juggling all that and it is so unbelievably unfair for one person to have to deal with so much. In posting on this thread I am amazed at all of you out there that are not dealing with just one issue but multiple ones. And you all manage to take care of jobs, children, homes, etc. The hardest part I think is that no one on the outside would even know how much some of us struggle just to get out of bed in the morning.
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StaceyLynn, I am so sorry about your pain, I really am.And you too Kate33, and everyone else, cyber hugs to all of you. xoxoxxo
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