# Coming Around



## IBD/IBS Author (May 24, 2007)

It's hard for me to admit but I probably have FMS too. I'm only 40 and in the past 18 years I've been hospitalized for viral meningitis 5 times; Dx'd with Colitis and then IBS as well; a brain tumor; and now I'm coming about to the fact that I probably have Fibromyalgia, too.The painful skin sensitivity has come and gone over the years, and I've ignored it. The poor sleep I've just attributed to being a 'light' sleeper and finally succumbed to installing a twin bed in my home office for those rough, sleepness nights, the every day pain in my neck, shoulders, lower back, and hips - in varying degrees - I chalked up to a car accident we had about six years ago, and the IBS and IBD, well, I've pretty much just learned how to work through them and live. But yesterday was an eye-opener. I slept poorly all night, mostly awakened by pain throughout most of my body - head, neck, shoulders, lower back, hips, knees, clenched jaw - the worst pain I've ever felt. I described it to my husband as feeling like someone had beaten me tip to toe with a baseball bat. I was exhausted by the morning and that feeling stayed with me all day long, then for no reason my stomach was crazed - slight D most of the morning and early afternoon - with little appetite most of the day. I wanted to just give up and lie around all day but I couldn't, we're working on tight deadline and will need to work virtually 7 days a week for the next two months to meet it so there was no sleep until the day's work was done. I feared I was getting the flu and went to bed with a heating pad and a healing hypnosis CD. And I felt better this morning - I still have my usual neck, shoulder, and lower back aches but don't feel pummeled like I did yesterday, my gut is back on track, and my appetite is back. But, all this prompted me to look at FMS symptoms more closely today - my Mom and Aunt have it and I've suspected for years I have it but just don't want to put another Dx in my medical charts so have chosen not to explore with my DO. But, do have to admit that I probably have it and am now looking at what I should change to cope with it - for my IBD and IBS I've already altered my diet accordingly but should add back juicing, I was reading that increasing Lecithin, Proteolytic enzymes, Vit. A and Coenzyme Q10 can be helpful - Any thoughts on this? - and really do need to work on making time in my days for a little more exercise. I don't think sitting hunched over books and the computer 7 days a week is helping. Well, sorry this is so long. . . but that's my story. I'll admit it to myself, and to you all, just not to my medical records. Cheers,Elizabeth


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## M&M (Jan 20, 2002)

Hey Elizabeth!Sometimes the most difficult part of having a chronic illness is admitting it to ourselves.That being said, it certainly wouldn’t hurt to investigate your symptoms with your doctor. There are many illnesses and diseases with similar and overlapping symptoms, and there is always a chance that a very treatable (or even curable) disease may be causing your specific symptoms. So it wouldn’t hurt to think about that. It can also be good to have documentation of a chronic illness, if in the future you ever have a severe worsening of your symptoms that makes you unable to work. So that’s just an idea!The very best thing to do on your own when you’re looking at a chronic illness like Fibro is to really cut your activity and stress level dramatically. That is 1 sure-fire, fool-proof way to feel better. That would be the best recommendation for you to try to feel a little better. But to do that, you have to take admitting to yourself that you’re sick to a whole other level, which can take us a little while. But doing that will help dramatically, and you’ll see your list of symptoms shorten right away. From there, the best treatment protocol is to start trying to treat each symptom individually. The first symptom to start trying to treat is your sleep disorder. Poor sleep quality can cause serious physical symptoms in “healthy” individuals. I read a study several years ago in which a group of healthy individuals were deprived of proper sleep, the group developed Fibromyalgia-like symptoms after a period of time. When they were allowed to return to their appropriate sleep patterns, their Fibromyalgia-like symptoms disappeared.I’m not saying that sleeping better will cure everything that’s wrong with you, but getting better sleep will help, at least some. During sleep is when our muscles are getting repaired – so if your sleep cycles are off, or your sleep quality poor, you’ll get that achy muscle feeling as soon as you wake up. They simply didn’t get repaired the way they needed to over night.Do you do anything, or take anything to help you sleep? That’s a symptom you could bring up with your doctor. There are a lot of prescription meds that can be used (with their off-label uses – like low-doses of trazadone or amitryptaline, or even anti-histamines, some blood pressure meds, etc.) to help you sleep better that you can safely take long-term. You may even be taking some of those meds throughout the day. You could start taking them at night to see if they help make you drowsy. There are also OTC medicines that can help too, like benadryl. Calcium can make some people a little drowsy, so that’s something you could add to a night-time routine. Then there are other things you can do before bed – taking a cool shower (something about the body temperature dropping causes the body to release sleep chemicals), soaking in a bath, going through a relaxation routine, making sure you go to bed and wake up at the same time everyday, etc – that will trigger your body to know that sleep is coming. Kind of like Pavlov’s dogs, you’re teaching your body that this routine means “get ready to go to sleep”.You might enjoy a book called No More Sleepless Nights by Peter Hauri and Shirley Linde. It really helps you to identify what is harming your sleep quality personally. They also lay out a plan to monitor your sleep and try to look for patterns in your everyday life that are affecting your sleep positively or negatively. They also teach you about good sleep hygiene, and how to maximize your sleep quantity and quality. The book was recommended to me by a sleep specialist, and it did help. It kind of lets you be your own sleep specialist.Then, once you’re on a better road with your sleep, you can start to work on the next symptom on your list. Maybe your neck pain, for example. (Or whatever you deem to be your next most bothersome symptom.)Yes, regular, gentle exercise would be a great thing to add to your treatment protocol. Warm water aerobics are highly recommended for Fibro patients, as it’s a low impact exercise and the warm water is good for the tight, banded Fibro muscles. I know other patients who use acupuncture, reflexology, or therapeutic massage to help with pain levels.The best way to try treating this, in my opinion, is to keep a detailed log of your symptoms everyday, and start off trying to treat 1 at a time. That way you’ll be able to tell what is helping more and what isn’t. If you start trying to treat all of them at the same time it gets difficult to track your progress (or the lack thereof). A detailed log is a good thing to keep because it can also help your doctor with a diagnosis, if you ever chose to go that route. Often patterns will emerge that shed light on what might be affecting each of your symptoms.This is a lot of information at once, but I hope it’s been helpful, at least a little. Dealing with a chronic illness looks like and feels like a very daunting prospect. Like looking up a shear cliff knowing you have to climb it. The good news is, you don’t have to climb the cliff today – you just have to find 1 little hand hold. And if any of us can help you find it, we’re happy to help!


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## IBD/IBS Author (May 24, 2007)

Thanks M&M,As always your thoughts and advice are wonderful and greatly appreciated. I will proabably come around and discuss this with my DO, as you suggest. But just for the moment feel better talking with our 'group' than others. Re; your suggestions for tackling the sleep issue first. Well, my biggest issue with sleep is that I've always been a light sleeper and in the past couple years my husband has become a snorer (he'd kill me if he knew I was sharing this with the world), thus I took to wearing earplugs for about 8 months, and if it got really bad just slept downstairs on the couch which was not terribly comfortable and could take me another hour or more before I fell back to sleep. It hurt his feelings a little but I finally made the decision a month ago to buy a twin bed that I put into my home office. Some nights I just start out sleeping there 'cause I can tell he'll snore, other nights I start out in our bed - some times I can stay ther all night, others I end up moving within the first hour of going to bed to my 'other'bed. BUT, my sleep is much improved, even if I have to move it's just to another room with a comfy bed and I'm able to fall asleep again easily. So, even though neither of us love this new sleeping arrangement it is helping me to sleep soundly throughout the night rather than tossing and turning and not sleeping well at all.And I like the idea of keeping a daily diary about how I feel Fibro-wise. I did this when first Dx'd with IBD and it helped immensely so I can see the virtues of how it will help here too.A quick question about symptoms - is slight numbness and/or tingling in the arms and legs generally associated with FMS? I get these in my right arm and right leg on occasion and when I brought it up with a GP about a year or so ago he actually got excited at the thought I had MS - a subsequent MRI showed that I didn't have MS. But, once that info. got back to the doctor he gave up and told me he had no other ideas - hmmpphh.Thanks for your help!Cheers,Elizabeth


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## M&M (Jan 20, 2002)

Wow, good for you! Being such a proactive patient - it sounds like you might actually be the kind of patient who would do a good job coping with this on your own. At least for now. Especially if your doctor is dismissive of your symptoms.Getting diagnosed with Fibromaylgia can be similar to getting your IBS diagnosis. Most patients have to see multiple doctors, many of which are dismissive, rude and hurtful, before finding one who actually knows how to diagnose Fibro properly and how to treat it most effectively. And I don't blame you for wanting to put off that process. Especially if you're finding how to treat some of your symptoms on your own.From what I've read, a lot of patients do have a tingling/burning sensation in the extremities. In the right leg, if it starts up in the buttock area, it could even be your sciatic nerve. I have loads of trouble with that myself, and it feels numb/tingling/weak and painful. Sometimes icing the spot where the pain originates can help, and gentle stretching can sometimes also help a little. Treating the pain in Fibro can be difficult, because it's usually that nerve pain, rather than an inflammatory pain. Sometimes various low-dose SSRI's or SSNI's are used with some success to treat the nerve pain. And recently, Lyrica was approved by the FDA for the nerve pain in Fibro patients. That's another reason, I think, why some patients turn to massage, acupuncture, and that kind of thing. It's a hard kind of pain to treat, at least for now.


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## IBD/IBS Author (May 24, 2007)

It could be the sciatic nerve - I tend to put a lot of my stress into my lower back area and when the tingling is at its worst my husband can find a Chestnut sized knot on that lower right side - sometimes him rubbing it makes it feel better, sometimes it's just too sensitive, so the tip on icing it could be helpful - I hadn't thought of that.I've also taken your other advice, about relieving some stress, to heart and have made time these past three days to do a little yoga - I used to do this every other day, religiously, but when this new project took over about three months ago felt I just didn't have the time to do the yoga anymore. Well, if you put it on your calendar, like a doctor's appt., I find I stick to it and the 30 mins. of gentle yoga stretches really helps! I do hatha yoga not the super power yoga that's popular today and I love it. Take care. Thanks for the great tips!Cheers,Elizabeth


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## M&M (Jan 20, 2002)

Woo hoo! Way to go Elizabeth! You're doing fantastic!I have heard from a LOT of fibro patients about doing yoga. They almost always give it rave reviews. It's great exercise, low impact, and good for fibro muscles, and it's also so relaxing. That's a really great idea.Good for you Elizabeth! I bet you'll feel some results before long. Sometimes, just knowing you're doing *something* to help yourself can make a big difference in how you feel. Way to go! You are definitely on the right track, and how fun to know you put youself there all by yourself!


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