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Does anyone on here suffer from Fibromyalgia?

LittleH

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I've just recently been diagnosed with fibromyalgia and I also have joint hypermobility syndrome. Other than a referral to a specialist physiotherapist, which I am waiting on for who knows how long, I haven't been given any advice on what to do. I have been seeing a doctor at the pain clinic but he has only been focusing on my knee, which up until recently has been recurrently dislocating. I had surgery on it back in May and that has stopped the dislocations. I am hoping that I can convince him to treat all of me, rather than just my knee. I am on lots of different pain meds but I don't know if they are the right ones for fibromyalgia. I would rather not be taking them but right now I have no choice. I don't know what to do... :cry:
 
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LadyOfMystery

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:hug: :hug: I am so sorry you are going through all this.

Have you outright asked your doctor to treat all of you? Is he the type of doctor that is able to treat all of you? You may need to outright ask him for a referral to another doctor who can better care for your needs.

All I can really do for you is pray, and I wish I could say something to help you. I am going through some of the things you are going through and I know how it feels. :hug:
 
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hopeinGod

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Fibro affects the whole person and if a doctor who treats it doesn't know that, then he's not worth his weight in aspirin. Depending upon what treatment approach the sufferer is attempting through the doctor's guidance is the general rule for newer pain issues. Far too many meds are being taken from the patient these days, which seems to be headed toward a marijuana based treatment plan that eliminates as many opiates as are possible. Less opiates and more weed.
 
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Joanne50

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yes I have it also suffer with Diabetes and depression, I feel for you and know what the pain is like, to make it worse is I now have terrible pain in my knee, and it looks like a operation, which I don't really want, going to see if I am able to have a cortisone injection as last time I ended up in hospital with sugar so hi they didn't show (scary_ thought I was going to die, take care keep me informed how you going love Joanne x
 
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LittleH

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I'm hurting so much today and I just can't stop crying. I really don't know what to do with myself.

I think I must have explained myself badly. I have a very good pain consultant who is treating me for fibromyalgia. It's just that, up until now, he has been helping me deal with pain in my knee due to recurrent dislocations and the NHS being useless and taking well over 4 years to do something about the fact that my MPFL wasn't healing on its own. Oh well, I've had the surgery now and it seems to be doing ok, no dislocations!

I'm waiting for an unknown date for a lidocaine infusion to help treat the fibromyalgia. Sometimes I really wish the NHS would just get it's proverbial butt in gear. :cry:
 
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Ave Maria

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Hey everyone. I am surprised that this thread has become so long. I don't think I expected it to gain so many posts.

Anyway, I'm not sure if I mentioned this but I am permanently disabled. I have mental illnesses, foot problems, Asthma, and numerous other health conditions as well as Fibromyalgia. I am also now dealing with a possible heart problem. I see a cardiologist October 30 about that issue.

Tonight I am dealing with quite a bit of pain. I would appreciate prayers.
 
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PROPHECYKID

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Hey everyone. I am surprised that this thread has become so long. I don't think I expected it to gain so many posts.

Anyway, I'm not sure if I mentioned this but I am permanently disabled. I have mental illnesses, foot problems, Asthma, and numerous other health conditions as well as Fibromyalgia. I am also now dealing with a possible heart problem. I see a cardiologist October 30 about that issue.

Tonight I am dealing with quite a bit of pain. I would appreciate prayers.

I will pray for you. To you health issues, Dr Joel Wallach cured Creflo Dollar's daughter from asthma in 2 weeks after the medical doctors gave up on her. Asthma is primarily a deficiency of essential fatty acids and can be triggered by dehydration and in a couple cases by dairy. Fibromyalgia is a selenium deficienvy. It is know as white muscle disease in sheep and they give the sheep selenium injections and they are all better. Because Medical Doctors only study drugs and no nutrition, they give pain meds. You really do not need to keep suffering with these issues.
 
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SquareC

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I too am a member of the Fibro Club. I was diagnosed in 97, back then it took an orthopedic doctor with a sub-specialty in diseases of the joints and muscles. I had the pain from a very young age but no one had even begun to recognize Fibro back then. My mother has it, undiagnosed. Unfortunately both of my daughters have inherited early-onset Fibromyalgia. That's the worst part to me.

I had a minor surgical procedure on Wednesday. They removed a fatty mass from just below the skin on my upper left arm. It was simple and I've always come out of anesthesia easily. The surgeon had warned me that a large percentage of Fibromyalgia sufferers have to deal with an unbearable degree of pain afterwards. Even though it was supposed to be an outpatient procedure, I wound up in the hospital for the next 30 hours so that they could control my pain until stronger medications could be prescribed to me. My regular painkillers weren't even close to up to the job. It hurts insanely for a small incision on my arm!

I would be grateful for any prayers you would offer on my behalf. Blessings to all of you!
 
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southernwonder1

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I have a mystery illness causing inflammation (shown in my bloodwork), pain and severe debilitating fatigue. The fatigue is the worst.

I was diagnosed with probable Celiac disease and cutting gluten has helped the pain only. I hate the fatigue. I am 32, live with my dysfunctional parents and am feeling hopeless.

I need prayer that my insurance company will approve my immune treatments for my immune system problem and maybe I will start feeling better.

Thank you.
 
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hopeinGod

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I have a mystery illness causing inflammation (shown in my bloodwork), pain and severe debilitating fatigue. The fatigue is the worst.

I was diagnosed with probable Celiac disease and cutting gluten has helped the pain only. I hate the fatigue. I am 32, live with my dysfunctional parents and am feeling hopeless.

I need prayer that my insurance company will approve my immune treatments for my immune system problem and maybe I will start feeling better.

Thank you.

Have you heard of chronic fatigue? It is a condition that is oftentimes connected to fibromyalgia. Digestive issues, too, are commonly associated with fibromyalgia, such as IBS and gluten intolerance.

Learning about your condition isn't an overnight study. It takes practically a lifetime to understand one's body and symptoms when fibromyalgia is at the core. Today's pill Nazi's will want to keep you from the pain meds that actually work and place you on something like gabapentin (neurontin) or pregabalin (lyrica).

One of them may help you. I've tried both and find gabapentin to be less intense at 100 mgs. The 300 mgs pills will cause me confusion. For me, I must also have a pain med, which is 10/325 hydrocodone. It has a couple side effects that take effort to control, especially constipation and dry mouth, so I take a senna laxative tablet with each dose, and make sure I drink electrolyte liquid, usually 4 oz. daily of the pediatric brand.

Don't fret about going gluten free. It's very popular today among celebrities, so buying safe foods is fairly easily accomplished. For instance, when shopping in Publix, all of the price tags on the counters have letters at the top right. GF means gluten free, so when you want the GF version of an item just search for the one's the contain that abbreviation. You'll have to experiment with them as not all products are pallitable.

I eat gluten free breads, waffles, pasta and many other things. They are a little more costly than regular breads, but I find some products much tastier than gluten breads. An example is ODI's white bread. The pastas take twenty minutes to boil. Also, millet bread is fine too, which I purchase at the health food store for around five dollars a small loaf.

David
 
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yeshuaslavejeff

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Dr.Joel Wallach has had international success helping people get over a lot of things that the regular doctors just give pain meds or surgery for.
But he and the thousands of other licensed doctors who are successful treating the body do not get "official" endorsements or their "approval" because of the same reason - they are often blacklisted- because they are successful treating the body for the same things that others can't do a thing for.

So, research, research, research - (personal research, personal seeking; because the medical research was done a hundred and more years ago)
everything mentioned has been completely researched in the past,
and the doctors who are still using methods that don't help a whole lot are the ones getting funding and patients and approval, while the doctors who do what works best get pushed out of the public eye and dissed by the establishment.

keep on seeking, as they are findable, Yhvh willing. speaking of which, it often takes a completely different life-style to be cured of whatever (not just cleansed of sin), to be physically 'repaired' in Christ Jesus because
a lot of things people get involved in, or have been in, can break down instead of build up the spirit, soul, mind and body. some of these things have been disclosed on this forum in places, but not too much, as some of these things are very popular and a lot of people(most people in fact) take part in them willingly without seeking to repent.
 
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PROPHECYKID

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Dr.Joel Wallach has had international success helping people get over a lot of things that the regular doctors just give pain meds or surgery for.
But he and the thousands of other licensed doctors who are successful treating the body do not get "official" endorsements or their "approval" because of the same reason - they are often blacklisted- because they are successful treating the body for the same things that others can't do a thing for.

So, research, research, research - (personal research, personal seeking; because the medical research was done a hundred and more years ago)
everything mentioned has been completely researched in the past,
and the doctors who are still using methods that don't help a whole lot are the ones getting funding and patients and approval, while the doctors who do what works best get pushed out of the public eye and dissed by the establishment.

keep on seeking, as they are findable, Yhvh willing. speaking of which, it often takes a completely different life-style to be cured of whatever (not just cleansed of sin), to be physically 'repaired' in Christ Jesus because
a lot of things people get involved in, or have been in, can break down instead of build up the spirit, soul, mind and body. some of these things have been disclosed on this forum in places, but not too much, as some of these things are very popular and a lot of people(most people in fact) take part in them willingly without seeking to repent.

This is what I would like and trying to get people here to understand. But most of them reject anything outside of what their conventional doctor tells them and they prefer to accept that there is no hope for them.
 
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southernwonder1

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I have heard of and been diagnosed with chronic fatigue syndrome and am finding out I have more specific illnesses as well. I have Common Variable Immunodeficiency, Celiac, Vit B12 and Iron deficiency. I do research like crazy, as I graduated from medical school but had to stop my residency training due to illness.
 
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iplay4JC

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My wife suffers from fibro and has chronic fatigue too. She has the same symptoms many have described in this thread too. She's attended many pain management sessions with different doctors and medical plans.

I can't keep track of the many meds she been on. Recently the only med that helps her get by is suboxone. I know she's very frustrated with this ailment as many here have also posted.

As her other half, I just want to say it's just as frustrating for us too.
 
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Anniecat

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This is what I would like and trying to get people here to understand. But most of them reject anything outside of what their conventional doctor tells them and they prefer to accept that there is no hope for them.

I'm coming in as a "newbie" so my post may be similar to others who have posted as well. I've had the symptoms of fibromyalgia for over 5 years and have become disabled from my job. It is a very painful and frustrating disease as many here know and, unfortunately what may work for one person may not work for another.

There can be a variety of reasons why those people may seem to not want to look outside of the standard medical care for fibro. A major factor in that could very well be not being able to pay for it. I know while I was working I was able to get massage therapy which was very helpful for me and, now, I can't get it.

I would love to go to someone and try a different therapy for what I have but it simply not a possibility. I am bound by my monthly income parameters as well as where I live. I could drive to another city but I have no transportation to do that. Then, you add to it, that my chronic fatigue and depression (that is a part of my fibro) makes it difficult to make the step in the first place of trying to find alternative therapies.

It's wonderful to share ideas of what helps you so that maybe another might get results with what works for you.

Anyway, just some thoughts from a newbie with fibromyalgia. Take care, and God bless!!

Annie
 
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OldFashionGal

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I'm coming in as a "newbie" so my post may be similar to others who have posted as well. I've had the symptoms of fibromyalgia for over 5 years and have become disabled from my job. It is a very painful and frustrating disease as many here know and, unfortunately what may work for one person may not work for another.

There can be a variety of reasons why those people may seem to not want to look outside of the standard medical care for fibro. A major factor in that could very well be not being able to pay for it. I know while I was working I was able to get massage therapy which was very helpful for me and, now, I can't get it.

I would love to go to someone and try a different therapy for what I have but it simply not a possibility. I am bound by my monthly income parameters as well as where I live. I could drive to another city but I have no transportation to do that. Then, you add to it, that my chronic fatigue and depression (that is a part of my fibro) makes it difficult to make the step in the first place of trying to find alternative therapies.

It's wonderful to share ideas of what helps you so that maybe another might get results with what works for you.

Anyway, just some thoughts from a newbie with fibromyalgia. Take care, and God bless!!

Annie

I wish it didn't cost more for things that are natural. I have been harmed by meds. I am highly allergic to them. The doctors have taken me off so many meds I can't even remember the names of them all LOL I'm either allergic or they don't help. I have Fibro, too, as well as a lot of other physical problems. For sure you are right what might work for one person might not work for another. I do find it odd with all the serious side effects of meds that anyone would knock alternatives. Yes, there is some natural things that can cause harm, too, and is why I always say to research everything for it's safety. Just don't understand how one can talk about the dangers of one without pointing out the dangers of the other.
 
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mmksparbud

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Have battled fibro for over 24 years--I am on disability for 5 years now. I've tried countless things. Lyrica was horrible, Savella even worse, I won't even try Cymbalta now, might as well just cut my liver out. Some people have ended up with liver problems from all the meds we end up on. Everybody is different what works for one, will not work on someone else. Some claim they have cured it by this or that--there are many things that are similar to fibro and they may not have really had fibro. There are things they have researched and discovered now, but no cure, just help. There are actual brain changes, they did a great research with brain scans. The scans showed clearly that our brains have gone through changes. Compared to those without fibro, our brains, when sleeping---are not asleep! The brain shuts down on "normals"--lights go dim and go out in the brain, with fibro, our brains stay lit up even in our sleep. They figure that is why we wake up feeling exhausted no matter how much rest we get. We do not process exercise the same way either. They did blood work on people with and without fibro, before, during and after exercise, each in about the same physical condition. The "normals" labs showed the toxins build up with exercise were eliminated within 2 hours after exercise, our levels remained high even up to more than 36 hours later! Our mental processes are different. We may show up as normal with regular mental testing--however, it's in how we process things that is different. Look up "Stroop test". It takes us twice as long to do these as a normal person. We are loosing grey matter, esp in hippocampus area. I was a champion speller, I can't spell beans now, and I used to type up to 80 words a minute, I type dyslexic now--I have to proof read everything, even with spellcheck, 3-4 times, and may still miss some typos.
As with everything else, these problems can be worse for some than others, and they can vary from time to time. There is also a problem with the brains remembering of pain. Ever since I had a neurological exam , with something very much like a cattle prod used to deliver small electrical shocks, it was very painful, to the point of tears (others say they felt almost nothing), since then, I have these electric shock pains in my feet that are very painful. They are short, but very, very intense. I wish I'd never had it done. My last mammogram left me in pain for 2 weeks. I am no longer going to do any testing that involves pain---period. But that is my choice. Not recommending that for others. Diet changes have helped some, such as gluten free--others it did nothing. A few things have been noticed though--we all seem to need magnesium--and it should be magnesium malate, calcium malate, check your D3 (not just D) have your thyroids check out. B6 is usually low. Our circadian rhythms can be way off.
Some research says we do not react to weather changes--that is no longer true. What the difference is in is sudden barometric pressure changes. That will make us flare up. We are to avoid stress (Ha!--not possible!)--Look up Low Dose Naltrexone (LDN)--it has helped thousands, but not covered by insurance as it is off label use. We have a tendency to "override" our meds--0they work for a short time, then quite, some have 2 or 3 meds that they alternate. (Good luck with getting a dr to do that one!) I overrode Methadone in 3 days. For tramadol has been the only thing that I did not totally override--but do not take with benedryl like meds, they block it--and even the pharmacists may not mention that, I did not know it for years until I found a drug interaction website.
I guess this will do for now!! Check out fibro sites, I belong to patientslikeme.com -- research site for many different conditions, I just go to the fibro forum. The more you know, the better care you can get from your dr---maybe--they can be high handed knowitalls who know nothing!!
 
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bbbbbbb

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Have battled fibro for over 24 years--I am on disability for 5 years now. I've tried countless things. Lyrica was horrible, Savella even worse, I won't even try Cymbalta now, might as well just cut my liver out. Some people have ended up with liver problems from all the meds we end up on. Everybody is different what works for one, will not work on someone else. Some claim they have cured it by this or that--there are many things that are similar to fibro and they may not have really had fibro. There are things they have researched and discovered now, but no cure, just help. There are actual brain changes, they did a great research with brain scans. The scans showed clearly that our brains have gone through changes. Compared to those without fibro, our brains, when sleeping---are not asleep! The brain shuts down on "normals"--lights go dim and go out in the brain, with fibro, our brains stay lit up even in our sleep. They figure that is why we wake up feeling exhausted no matter how much rest we get. We do not process exercise the same way either. They did blood work on people with and without fibro, before, during and after exercise, each in about the same physical condition. The "normals" labs showed the toxins build up with exercise were eliminated within 2 hours after exercise, our levels remained high even up to more than 36 hours later! Our mental processes are different. We may show up as normal with regular mental testing--however, it's in how we process things that is different. Look up "Stroop test". It takes us twice as long to do these as a normal person. We are loosing grey matter, esp in hippocampus area. I was a champion speller, I can't spell beans now, and I used to type up to 80 words a minute, I type dyslexic now--I have to proof read everything, even with spellcheck, 3-4 times, and may still miss some typos.
As with everything else, these problems can be worse for some than others, and they can vary from time to time. There is also a problem with the brains remembering of pain. Ever since I had a neurological exam , with something very much like a cattle prod used to deliver small electrical shocks, it was very painful, to the point of tears (others say they felt almost nothing), since then, I have these electric shock pains in my feet that are very painful. They are short, but very, very intense. I wish I'd never had it done. My last mammogram left me in pain for 2 weeks. I am no longer going to do any testing that involves pain---period. But that is my choice. Not recommending that for others. Diet changes have helped some, such as gluten free--others it did nothing. A few things have been noticed though--we all seem to need magnesium--and it should be magnesium malate, calcium malate, check your D3 (not just D) have your thyroids check out. B6 is usually low. Our circadian rhythms can be way off.
Some research says we do not react to weather changes--that is no longer true. What the difference is in is sudden barometric pressure changes. That will make us flare up. We are to avoid stress (Ha!--not possible!)--Look up Low Dose Naltrexone (LDN)--it has helped thousands, but not covered by insurance as it is off label use. We have a tendency to "override" our meds--0they work for a short time, then quite, some have 2 or 3 meds that they alternate. (Good luck with getting a dr to do that one!) I overrode Methadone in 3 days. For tramadol has been the only thing that I did not totally override--but do not take with benedryl like meds, they block it--and even the pharmacists may not mention that, I did not know it for years until I found a drug interaction website.
I guess this will do for now!! Check out fibro sites, I belong to patientslikeme.com -- research site for many different conditions, I just go to the fibro forum. The more you know, the better care you can get from your dr---maybe--they can be high handed knowitalls who know nothing!!

This is a great post and very true. I am very fortunate in that I got my diagnosis within six months and have found three drugs that continue to work for me - Cymbalta, gabapentin, and temezapam (for sleep). I function fairly well, but have noticed distinct differences between my life before and my life now.

What works for one person may not work for another, so my advice is to keep trying possible things until you find something that actually works. When it stops working then have another plan of action to put in place. Fibromyalgia is really dreadful and I would not wish it on my worst enemy.
 
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zippy2

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Hi, I am yet another victim of fibro. I have a lot of pain, most of the time. I had to quit working 7 years ago.

We know how dreadful this disease is, but to most Americans ....well their eyes kinda glaze over when you mention

Fibro. Know what I mean? It hurts your feelings when people don't believe you are in pain and here you are sometimes it hurts so bad it makes you scream. Even some of my doctors are like that...my pain doc for example...he only talks about my back pain. just won't admit that fibro exists. :sigh: Well that's not totally true....I saw on my paperwork 'Severe Fibromyalgia" so I guess he knows but just doesn't want to talk about it.

I want to complain to someone!!!!!!!!!!!!! Eeeeeeeeeeeeek
 
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Hi, I am yet another victim of fibro. I have a lot of pain, most of the time. I had to quit working 7 years ago.

We know how dreadful this disease is, but to most Americans ....well their eyes kinda glaze over when you mention

Fibro. Know what I mean? It hurts your feelings when people don't believe you are in pain and here you are sometimes it hurts so bad it makes you scream. Even some of my doctors are like that...my pain doc for example...he only talks about my back pain. just won't admit that fibro exists. :sigh: Well that's not totally true....I saw on my paperwork 'Severe Fibromyalgia" so I guess he knows but just doesn't want to talk about it.

I want to complain to someone!!!!!!!!!!!!! Eeeeeeeeeeeeek

I hear you loud and clear. I know exactly what you mean. My brother and his family will have nothing to do with me. They think I am a drug addict and worse. Plus, my sister-in-law has slandered me to everyone she knows. Fortunately, for me, they live three hours away.

My parents are gone now. Although my mother never fully understood, she loved me and did her best to help me. I am on my own now and am very grateful that I am self-employed and can set my own hours.

You need a better doctor. Mine knows that fibro exists and worked with me by trial and error to get my pain under control and my sleep, as well. I can function normally - even to the point of going to China on my own to teach the Bible for a month every year. It is only the grace of God that has allowed me to do that.

I have long since learned not to tell anyone about my fibro, except fellow sufferers. I talked this morning with a lady I know who is a missionary in India who has fibro. It helps to encourage each other. For many years I went to a support group until it dwindled away. They were a real help to me even though I was the only man in the group. I can say it is somewhat harder being a man with fibro since so few men come down with it and men aren't supposed to be whiners.

The other issue is that I look wonderfully healthy. I used to hope that I could do something radical like vomit blood to show people some idea of what I suffer. Now, I just let people think that I am really, really healthy.

I hope this encourages you and will pray that your pain will ease up and that you will be able to get good help from your doctor.
 
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