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Post by wonderwoman on Oct 10, 2016 5:36:27 GMT
How often do you go thru flare ups? How long do they last? What meds are working for you? Anyone trying natural remedies? I went 2 months with out a flare up and thought it was over... then today the nightmare started again.. How do I expect people to understand this when I don't even understand it myself....  |
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Post by mom on Oct 10, 2016 5:42:04 GMT
I am no help at answering your questions, but I just wanted to say I am sorry you are experiencing this.
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Post by wonderwoman on Oct 10, 2016 5:46:34 GMT
I am no help at answering your questions, but I just wanted to say I am sorry you are experiencing this. thanks mom..  |
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Post by Lexica on Oct 10, 2016 6:26:44 GMT
From my experience, it almost has a mind of its own. I know I will get a flareup if I overdo something like try to do something physically tiring for too many hours in a day, or if I am going through something very stressful. But then other times, I get a bad flareup and I can't pinpoint what triggered it. I think it is different for everyone and I gave up explaining it.
I experienced some major allergic reactions to many of the fibromyalgia medications so I asked to try just treating my most annoying symptoms instead. I was having panic attacks for the first time ever, so he put me on a medication for that. And for the fatigue, another medication, and for the insomnia, yet another medication. It was better than no medication, but not really good enough to stay on this routine. He then tried me on another pill that has shown success with fibro symptoms and it works well enough for me to stay with it.
Unfortunately, medications for this is trial and error, depending on what your body responds to. I could give you the exact same meds that I am on and they may not help you at all. Are you taking anything at all right now? I swore that was the route for me because I hate meds. But I buckled with the panic attacks. I don't ever want to experience those again.
Have him recommend a good overall fibro med and give it enough time to see if it will help you. You may need other meds to handle some of the other symptoms, like the fatigue that I still get even thought main fibro med has helped considerably. If you can find something that gives you some help in the most areas, consider that one a winner.
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Post by wonderwoman on Oct 10, 2016 7:16:29 GMT
From my experience, it almost has a mind of its own. I know I will get a flareup if I overdo something like try to do something physically tiring for too many hours in a day, or if I am going through something very stressful. But then other times, I get a bad flareup and I can't pinpoint what triggered it. I think it is different for everyone and I gave up explaining it. I experienced some major allergic reactions to many of the fibromyalgia medications so I asked to try just treating my most annoying symptoms instead. I was having panic attacks for the first time ever, so he put me on a medication for that. And for the fatigue, another medication, and for the insomnia, yet another medication. It was better than no medication, but not really good enough to stay on this routine. He then tried me on another pill that has shown success with fibro symptoms and it works well enough for me to stay with it. Unfortunately, medications for this is trial and error, depending on what your body responds to. I could give you the exact same meds that I am on and they may not help you at all. Are you taking anything at all right now? I swore that was the route for me because I hate meds. But I buckled with the panic attacks. I don't ever want to experience those again. Have him recommend a good overall fibro med and give it enough time to see if it will help you. You may need other meds to handle some of the other symptoms, like the fatigue that I still get even thought main fibro med has helped considerably. If you can find something that gives you some help in the most areas, consider that one a winner. The Dr. gave me gambiepentin, meloxicam, voltaren gel and said she would like to see me try cymbalta but they are $300. I have just been taking advil during the flare up... |
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Post by georgiee on Oct 10, 2016 7:32:23 GMT
I have had fibro for 15 years. I am 62 now. It has a mind of its own. I have tried so many things, looking for that magic cure. There is none. I did the holistic route for awhile but needed more. This is what I've been taking for the last few years. But I still have flares.
Paxil for depression
Savella for fibro
Librax for the IBS
Zanaflex, a muscle relaxer as needed. Like when I over do stuff
Clonzepan as needed for anxiety
Stress always causes flares. I also diffuse oils at bedtime to help me sleep. Salon pas are a stick on pain patch that you can get at the drugstore that works pretty good on just a specific area. It saves me from taking so much ibuprofen.
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Post by wonderwoman on Oct 10, 2016 7:39:53 GMT
I have had fibro for 15 years. I am 62 now. It has a mind of its own. I have tried so many things, looking for that magic cure. There is none. I did the holistic route for awhile but needed more. This is what I've been taking for the last few years. But I still have flares. Paxil for depression Savella for fibro Librax for the IBS Zanaflrx. A muscle relaxer as needed. Like when I over do stuff Clonzepan as needed for anxiety Stress always causes flares. I also diffuse oils at bedtime to help me sleep. Salon pas are a stick on pain patch that you can get at the drugstore that works pretty good on just a specific area. It saves me from taking so much ibuprofen. Yes, I use the Salon Pas too.. I have been trying my hand at essential oils as well.. Any blends work better than others? thanks |
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Post by scrappintoee on Oct 10, 2016 10:22:50 GMT
I have not been officially diagnosed with it; but I do wonder if that's what I have--( I'll be seeing a rheumatologist in the near future). I just wanted to give ((( hugs ))) because I deal with SO. MUCH. PAIN. every day. Some days aren't as bad as others, though! Although I have different types of pain, numbness, tingling, etc in many different areas, the ONE thing that is realllllly getting me down recently is not being able to open SIMPLE things like a package of cheese. (My hands/ wrists/ sometimes it's just my thumb(s) aren't that bad ALL the time---thank God----but when they ARE painful---omg! I'll find a post I recently wrote about ALLLL the things I've tried, (Different types of doctors, Prescriptions, natural stuff, Physical Therapy, heat and/or cold, etc) then paste it here for you to read. Again----I'm not saying I actually have fibro; but I hope at least SOME of my pain relief methods can help you. (( hugs )) to you and everyone else who has chronic/ acute pain!!! |
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MsKnit
Pearl Clutcher
RefuPea #1406
Posts: 2,648
Jun 26, 2014 19:06:42 GMT
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Post by MsKnit on Oct 10, 2016 12:26:48 GMT
The only thing predictable about Fibromyalgia is that it is unpredictable. Flares can last a day, week, month, year, or more. Often, I find myself still in a flare when I believe another hits, because the pain escalates considerably. I swear, I get accustomed to the pain, learn how to half function, and Fibro throws a curve ball which starts the process all over.
It took 8 or 9 years for me to finally get a diagnosis. My hands and feet hurt all the time. It isn't always noticeable. However, in the past 12 years, one time there was no pain in my hands. It was the strangest sensation ever.
Anyway, Lyrica has helped tremendously. It has also caused me to put on weight. Plus, I swear it has ruined my skin and hair. I swell. I don't even recognize my hands anymore, because they are always holding fluid. I tolerate the side effects because I am functioning more often than not now.
Also, I move around frequently. I never sit for a full hour without walking back the hall or downstairs. Exercise is great. However, it is frustrating. Talk about 2 steps forward and 3 steps back. It's necessary to gradually build up. Then a flare hits or extreme fatigue or both, it knocks me off my feet and I have to start over.
At this point, I wonder if Fibro does something to the muscle. I feel like I lose muscle so fast. Forget endurance. One day I am fine. The next a flight of stairs about kills me. I regularly climb stairs in my house. Up and down them all day. Then, boom, I find myself huffing and puffing over a single flight. It's bizarre!
My internal thermostat doesn't work. Anyone else have this? If I get cold, it takes forever to get warm. And, when I get overheated, it takes forever to go away. I had to give up swimming due to the cold water. The cold would go right to my bones and I would hurt so bad while waiting to get warm. I always keep a jacket with me. During the summer, it can be bliss to get into a hot car when I'm fighting the cold.
Something I haven't seen mentioned regarding the flares...the weather will trigger mine. My husband figured this one out. The flare hits 2 to 3 days before some weather related event. We joke that I am a weather vane.
You are right about not being able to help others understand what is going on when you are just as baffled. I understand the disbelief simply because some of it, I wouldn't believe it either except for I am dealing with it.
(((((Hugs)))))
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Post by chichi on Oct 10, 2016 12:40:08 GMT
How's your vitamin D levels?
I have it too
I started using liquid vit d I get from GNC.
I found that vit d tablets or gel tabs didn't get my levels up
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Post by Lexica on Oct 10, 2016 20:00:33 GMT
I have found the using an anti anxiety/anti depression medication is essential for me. Not for depression, because up until my mom passed away, I wasn't dealing with depression. I am now, but I know it is due to losing her. I am on the following meds. I don't think the particular brand of medication is as important as whether your doctor is addressing the specific issue with something similar.
This is a list of my current meds. I am sticking it in a spoiler because the list is too long for people without fibro to understand. I feel like a hypochondriac when looking at the list. I really tried to do without these, but have found every one of them to be essential to keep me functioning on a decent level.
Imipramine for fibromyalgia symptoms in general. There are many others that are very good, but I'm allergic to most of them. I was on the Gabapentin that you are on for general fibro symptoms and it worked fabulously until I developed the allergy and had to stop it. I liked that one a great deal.
I do morphine ER and Vicodin for pain, but that is pain from a spinal surgery, not fibro. My doctor explained that narcotics do not work on fibro pain, because it is not "real" and the pain relievers that work for real pain don't touch fibro pain. The general fibro medications are what handle the fibro pain.
I typically use melatonin for insominia, or if I am really bad I will go ahead and use Ambien, but they scare me a bit. I have been caught up and wandering around the house doing things when I am on the Ambien, so I hide my car keys and warn my renter to stop me if I head out the door (he is up all night and sleeps in the day)
Celexa for panic attacks
I use Fioricet for severe headaches*
Flexeril for muscle pain and spasms, as needed*
Meloxicam for inflammation, as needed*
(*I try not to use the above 3 if I can to avoid harming my kidneys and liver)
Provigil for extreme fatigue
If you find you are trying to repeatedly deal with a specific symptom and it is really, really bothering you and none of your medications are handling it, try asking your doctor if there is something you can add to your mix. I am very irritated by muscle spasms that happen all over my body, but I don't want to be on muscle relaxers every day, so I just suck it up.
And like MsKnit posted, I would never have believed it if I wasn't experiencing it myself. When my doctor told me I had fibromyalgia, I refused to believe it until it was the ony explanation for everything that was happening to me. Mine was diagnosed very quickly because I was already a chronic pain patient when I asked what the heck was going on with this pain that came and went to different parts of my body that I hadn't injured. I shouldn't have felt any pain when on the morphine, yet I had all this weird severe pain everywhere with no known injury. The doctor did the pressure point test and it was so very painful! He said I should not feel any pain at all unless I had fibromyalgia. It hurt like a mother, so I was forced to believe him.
I know I would be thinking a friend was exaggerating with all the weird symptoms. It just seems too strange and unbelievable, and as much as I wanted to deny it, I had to admit it is real.
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Post by vspindler on Oct 10, 2016 20:18:56 GMT
One of the hallmarks of Fibro is that antiimflammatory based pain relievers (like Aleve) do not help. (If anyone tries telling you about anti inflammatory treatments, diets, etc etc that is a sign that they are trying to sell you on something and really don't know what they are talking about- advice from my rheumatologist.)
Flares suck though. The best I can do is accept that I am not going to get anything done and take it easy. Sometime heating pads and gentle stretching can help. I really need to try not to overdo it and to get enough rest.
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Post by scrapsuzy on Oct 10, 2016 21:05:24 GMT
I've been diagnosed for over 20 years. I've tried so many different things and combo of things. Frankly, I don't have the energy to type it all out when there are so many stories out there already. Right now I actually appreciate my fibro pain when I am only feeling that, because I'm also fighting liver disease and on the transplant list, and have additional pain from that. The only thing that helps with that pain is a Fentanyl patch, but that leaves me still feeling the fibro pain... which now I handle better because the rest of it is so huge, and the regular fibro pain (4 out of 10 on a pain scale) isn't so bad in comparison. What really sucks is when I get a big fibro flare, like I'm having now, and there is nothing I can do except heating pads.
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Post by wonderwoman on Oct 10, 2016 21:39:17 GMT
I've been diagnosed for over 20 years. I've tried so many different things and combo of things. Frankly, I don't have the energy to type it all out when there are so many stories out there already. Right now I actually appreciate my fibro pain when I am only feeling that, because I'm also fighting liver disease and on the transplant list, and have additional pain from that. The only thing that helps with that pain is a Fentanyl patch, but that leaves me still feeling the fibro pain... which now I handle better because the rest of it is so huge, and the regular fibro pain (4 out of 10 on a pain scale) isn't so bad in comparison. What really sucks is when I get a big fibro flare, like I'm having now, and there is nothing I can do except heating pads. So sorry~ It totally sucks to be in so much pain and nothing really helps.. I swear yesterday even my scalp hurt.. today is much better. |
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Post by wonderwoman on Oct 10, 2016 21:43:21 GMT
One of the hallmarks of Fibro is that antiimflammatory based pain relievers (like Aleve) do not help. (If anyone tries telling you about anti inflammatory treatments, diets, etc etc that is a sign that they are trying to sell you on something and really don't know what they are talking about- advice from my rheumatologist.) Flares suck though. The best I can do is accept that I am not going to get anything done and take it easy. Sometime heating pads and gentle stretching can help. I really need to try not to overdo it and to get enough rest. This is true, I always have had the push through pain mentality... with fibro it does not work.. :-( |
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Post by mrsscrapdiva on Oct 11, 2016 12:44:42 GMT
That is how I feel too. It is so unpredictable and frustrating. I have stairs in my house and I always seem to "talk to myself" like ummm that was easy today or oh man, I can barely lift each leg to get to the top.
I am freezing and can't heat up and everyone around me is warm or I am sweating like crazy and can't stop it and it seems like no one else is hot. I have a feeling some of this has to do with two things - how much carbs I have been consuming and how my anxiety is.
My flare ups are usually revolving around busy or stressful times that I don't take care of myself for a few days. Like enough sleep, water, not taking pills on time, etc. My predictable flareups with all over pain is when I have pms until about 2 days after my period has stopped. 
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Post by Lexica on Oct 11, 2016 19:57:23 GMT
Have any of you had your skin hurt all over, especially the bottoms of your feet? Sometimes the bottoms of my feet hurt so badly that I can hardly put my feet on the ground to get out of bed. Then when I force myself to do so, and I get into the shower, the pain from the water spray hitting my skin is just about unbearable! It feels pins/needles sharp no matter what setting I turn it to.
It is on days like that when I declare a "do nothing" day and I put fresh pjs on after my shower, crawl back into bed, and watch Netflix for the day, napping when I can. I even brought a small office refrigerator upstairs and keep it in my clothes closet. I keep some easy snacks in there for the days where it hurts too much to go downstairs to the kitchen for food. I can grab a yogurt, a piece of fruit, and a handful of almonds from the upstairs fridge and I'm good to go.
If you also experience this, have you found anything to reduce that pain? I just hate getting into the shower on a day like that because I know how much it is going to hurt.
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MsKnit
Pearl Clutcher
RefuPea #1406
Posts: 2,648
Jun 26, 2014 19:06:42 GMT
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Post by MsKnit on Oct 11, 2016 20:14:42 GMT
Have any of you had your skin hurt all over, especially the bottoms of your feet? Sometimes the bottoms of my feet hurt so badly that I can hardly put my feet on the ground to get out of bed. Then when I force myself to do so, and I get into the shower, the pain from the water spray hitting my skin is just about unbearable! It feels pins/needles sharp no matter what setting I turn it to. I have. My hands and feet always hurt. I have to be careful of what kind of shoes I wear. Even that doesn't help at times. At one point, I didn't know if the shower was going to hurt that day or not. There is one setting that will start the pain most of the time. I have been able to use the shower to my advantage. Sometimes I feel like every cm itches or there are bugs crawling all over me. One particularly bad episode with the itching, I tried taking a shower. If it could start the pain cycle, why couldn't it put a stop to it? It worked. |
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Post by Lexica on Oct 11, 2016 20:37:08 GMT
Have any of you had your skin hurt all over, especially the bottoms of your feet? Sometimes the bottoms of my feet hurt so badly that I can hardly put my feet on the ground to get out of bed. Then when I force myself to do so, and I get into the shower, the pain from the water spray hitting my skin is just about unbearable! It feels pins/needles sharp no matter what setting I turn it to. I have. My hands and feet always hurt. I have to be careful of what kind of shoes I wear. Even that doesn't help at times. At one point, I didn't know if the shower was going to hurt that day or not. There is one setting that will start the pain most of the time. I have been able to use the shower to my advantage. Sometimes I feel like every cm itches or there are bugs crawling all over me. One particularly bad episode with the itching, I tried taking a shower. If it could start the pain cycle, why couldn't it put a stop to it? It worked. Oh wow, pain in your hands and feel all the time? I am so very sorry. I don't know that I could handle that. Just having the bottoms of my feet in agony and I'm back in bed and under the covers, refusing to participate in my life that day. I described the pain to my ex fiancé telling him that it feels as if all the skin on my feet has been ripped away and I am walking on the raw muscle tissue - over rock salt. That is as accurate a description as I can come up with. The extreme pain mixed with burning and tingling. I so hope yours is not like that all the time.
I have never had any of the fibro pain remain in the same spot for more than a couple of days, day after day after day. It seems like just when I get used to the pain somewhere, it moves on to somewhere else or stops all together for a while. Are there varying degrees of Fibromyalgia? If so, I would say you have got it much worse than I do. I also don't get a feeling like there are bugs on me. I think that would drive me insane. I am so very sorry you deal with this. Is this possibly from another medical issue other than fibromyalgia?
Hmmm, and using the shower to stop a pain cycle! That is really interesting. I wonder if it works similar to a TENS Unit, where it just gives your brain something different to focus on? I can get a handle on my spinal pain when I use a TENS Unit for a full hour. That isn't fibro pain, that is from my spinal surgery damage. It is an entirely different kind of pain, if that makes sense. Fibro pain feels entirely different to me than regular pain.
Does the pain you were experiencing return when you stop the shower water?
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MsKnit
Pearl Clutcher
RefuPea #1406
Posts: 2,648
Jun 26, 2014 19:06:42 GMT
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Post by MsKnit on Oct 12, 2016 3:19:47 GMT
I have. My hands and feet always hurt. I have to be careful of what kind of shoes I wear. Even that doesn't help at times. At one point, I didn't know if the shower was going to hurt that day or not. There is one setting that will start the pain most of the time. I have been able to use the shower to my advantage. Sometimes I feel like every cm itches or there are bugs crawling all over me. One particularly bad episode with the itching, I tried taking a shower. If it could start the pain cycle, why couldn't it put a stop to it? It worked. Oh wow, pain in your hands and feel all the time? I am so very sorry. I don't know that I could handle that. Just having the bottoms of my feet in agony and I'm back in bed and under the covers, refusing to participate in my life that day. I described the pain to my ex fiancé telling him that it feels as if all the skin on my feet has been ripped away and I am walking on the raw muscle tissue - over rock salt. That is as accurate a description as I can come up with. The extreme pain mixed with burning and tingling. I so hope yours is not like that all the time.
I have never had any of the fibro pain remain in the same spot for more than a couple of days, day after day after day. It seems like just when I get used to the pain somewhere, it moves on to somewhere else or stops all together for a while. Are there varying degrees of Fibromyalgia? If so, I would say you have got it much worse than I do. I also don't get a feeling like there are bugs on me. I think that would drive me insane. I am so very sorry you deal with this. Is this possibly from another medical issue other than fibromyalgia?
Hmmm, and using the shower to stop a pain cycle! That is really interesting. I wonder if it works similar to a TENS Unit, where it just gives your brain something different to focus on? I can get a handle on my spinal pain when I use a TENS Unit for a full hour. That isn't fibro pain, that is from my spinal surgery damage. It is an entirely different kind of pain, if that makes sense. Fibro pain feels entirely different to me than regular pain.
Does the pain you were experiencing return when you stop the shower water?
The pain in my hands and feet varies. Burning, joint pain (not arthritis), the fleshy parts of my palms/soles and base of my fingers/toes. It is always there, though I don't register it all the time. I've come to the conclusion that the pain can be like faint white noise. It isn't noticeable unless it is completely gone. In all this time, I've had a single episode with no pain in my hands which was completely bizarre. That was the point that I realized the pain was never gone. It's scary to think of the amount of pain I have managed to block from notice. I was tested for different kinds of arthritis, lyme disease, and whatever else they could think of. Plus, the Fibro presented in my hands and feet first, along with severe fatigue. Between the pain and fatigue, I left my bed only when necessary. It hurt so bad to walk on my feet. I couldn't hold a book. It was hell. I have used it to stop that kind of pain cycle more than once. I've had no problem with the issue returning either. It's like the sensation of the shower interrupts the nerves. I don't know. I'm just thankful for the relief. The first time I tried it, I was desperate. I thought I was going to lose my mind from the persistent itching. You are so right when you say it is a different kind of pain. I don't have any way to describe it. I can just tell the difference. Occupying my mind helps keep me from noticing the pain. It's why I like to knit. 1. The movement keeps my joints lubricated and limber. Relieves the pain, too. I can feel my hands start to stiffen and I'll grab the needles and knit a few rows. 2. A complicated pattern will keep me busy, so the pain fades into the background. I've developed so many coping mechanisms just to deal with the Fibro. |
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Post by wonderwoman on Oct 12, 2016 5:43:09 GMT
WOW . seeing all these post I can relate to so many.. The pain, the feeling like bugs are on you, the feeling like getting burned with an iron... Feeling like you are getting crushed from all directions. Sometimes it hurts just to get a hug from my husband.
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