Great article on 10 most painful conditions

Top Painful Medical Conditions

The 10 Most Painful Conditions

Doctors divulge the most excruciating illnesses. Ouch.
By Karen Cicero  

Photo by Victor Prikhodko/Getty Images
After an ER doc determined that a tiny kidney stone caused my husband's sudden agony last year, a nurse came to deliver more pain meds and a dose of sympathy: "I passed a stone a couple of months ago, and it was worse than any of my four labors," she told him. Indeed, when Prevention asked doctors for their opinions about which conditions trigger the most horrific pain, kidney stones made the list. But even they're outranked by several other diagnoses with more intense, longer-lasting distress. Here, from bad to horrible, are the worst of the worst:
10. Post-Surgical Pain
Whether you were in the hospital for work on your shoulder or your ticker, you're at risk for nerve injuries that lead to constant pain. "Some research has shown that half of people who have chest surgery develop chronic pain," says Lynn Webster, MD, past president of the American Society of Pain Medicine. "In the future, we'll be able to identify, through genotyping, who is most at risk." In the meantime, he cautions patients not tough it out in the hospital because managing the acute pain lessens the risk of long-term problems.
9. Kidney Stones
The pain from these itsy bitsy masses (which range in size from a grain of salt to a pearl) comes on fast and furious, with the back, lower abdomen, and groin area being in the greatest discomfort. Most of the time, doctors prescribe pain-killers and advise you to drink plenty of water and wait. Once you pee out the stone, the pain subsidies almost immediately. But don't think you're out of the woods yet: The doctor will probably suggest that you have the stone tested, because, depending on the type, changes in your diet may prevent the whole ordeal from happening again.
8. Chronic Lower-Back Pain

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"Lower back pain is like death and taxes; everybody gets it at some point," says out Sean Mackey, MD, PhD, chief of the division of pain medicine at Stanford University School of Medicine. About 9 in 10 of those patients recover fairly quickly, he says, but for the remainder, the pain becomes chronic and life-altering. "The severity of the original injury and how prone you are to anxiety plays a role in whether your pain will persist," he says. Physical therapy focused on core strengthening is one of the most effective treatments.
7. Peripheral Neuropathy
Commonly caused by diabetes, damage to the tips of the nerves going to the fingers, hands, and toes trigger this pain. "I've been told that it feels like walking on razor blades," says Charles Kim, MD, assistant professor of rehabilitation and anesthesiology at NYU Lagone Medical Center. Anti-seizure medications calm down irritated nerves, but Kim says exercise is also important to improve blood flow.
6. Cancer Pain
Whether it's from the disease itself, treatments like chemo, or a combo of the two, some cancer patients—especially those with advanced disease—suffer immense pain. Among the most agonizing cancers: pancreatic, brain tumors, and sarcomas. Doctors prescribe medications based on the type of pain; for instance, steroids may help pain caused by swelling.
5. Postherpetic Neuralgia
It's the pain that lingers in about 10% of patients who come down with shingles, the mature version of chickenpox. (After you have chickenpox, the virus lies dormant in your brain and spinal cord and may re-activate as shingles as you age.) "When the shingles rash goes away, some patients are left with burning nerve pain that's difficult to treat," says Mackey.
4. Trigeminal Neuralgia
Infections, tumors, and other conditions can trigger this pain in the trigeminal nerve, which carries sensation from your face to your brain. "Patients describe it as feeling their face is on fire," says Kim. The pain tends to be throbbing, and in some cases, occurs every few minutes with the right side of the face most often being affected. One of the go-to treatments: anti-seizure medication.
3. Interstitial Cystitis
It's a fancy way to refer to an inflamed bladder. "Patients tell me that it feels like their pelvic area is burning all the time," says Webster. In extreme cases, sufferers may urinate 60 times a day. Physical therapy, nerve stimulation, and medications, such as anti-inflammatories, help provide relief.
2. Complex Regional Pain Syndrome
Although the name of this condition sounds bogus, the pain is all too real, typically occurring in one of the limbs after trauma or simple injury—even a run-of-the-mill twisted ankle or broken arm. The pain and swelling starts in a small area then spreads throughout the limb, causing it to feel "like a blow torch," in the words of one sufferer. "I saw a patient who came in on winter day with one of his pant legs cut off," says Kim. "Just having the material touch his skin brought about too much pain to bear." Doctors aren't sure why some people develop the condition, though they generally agree there's a genetic component, and more women are affected than men. An intense combo of rehab, medications, and neuro-stimulation helps control the pain.
1. Cluster Headaches

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More debilitating than a migraine, cluster headaches produce sudden, sharp pain that's usually concentrated around one eye or one side of the head, and episodes occur in clusters for weeks or months. "It's nicknamed the suicide headache because patients have suicidal thoughts to get away from the pain," says Mackey. "My patients have told me that it makes them want to bang their heads against a wall or take a drill to their head." While the cause isn't known, steroids, calcium-channel blockers, and anti-seizure medication may bring relief for sufferers, most of whom are men.
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Merry Christmas pain or no pain

I love the holidays and always have since I was a little girl, (many, many years ago). lol. So when I knew I had to have a three day treatment of IVIG during December I was bummed out. It is not just the three days of sitting in a chair hooked up to two IVs for four-five hours, but it is the sickness that comes with it for days after. I was still nauseated Monday after having the IVIG Wed, Thurs, Fri so sick Sat, Sun and Monday and hoping today is better. I have hope. But gee it is Dec. Who has time to take a week off in the middle of Dec? lol. But I have made myself understand it is ok. If I do not take care of  myself then how can I enjoy my family when they come for Christmas, or that beautiful Grandbaby. So sit on my butt and do  nothing for six days and just know I will get everything done regardless and if I don't, I have a good excuses lol.


I have to say the IVIG did really help last month, I felt good right up to the time of getting the new treatment this month. This is the first time that has happen. So it was great to have that energy. Still pain, but with energy it is not as bad.

I do have an appointment with the rheumy next week, I will talk to him about a few things that are concerning me about the IVIG. Number 1 when I am done, I feel I can not breath that good, chest is heavy I read that Ivig can cause this to happen as it is infused it can fill your cavity's around your lungs, which then takes time to get rid of as the IVIG fluid takes longer to leave the body more so then normal liquid. But in a contradiction it also is said it dehydrates your body thus the reason to hydrate well during and after infusions. It is still confusing to me. But I feel so bloated after for about 4 days. Also I feel some of my encephalopathy symptoms are getting worst, or coming back or flaring or how ever one wants to put it. Now whether or not it is the time of the year but I think it is because the Imuran was decreased too low. I find myself not being able to decide on what to do with my hands when holding something in both, I look at the right, I look at the left one, and I am confused on what to do first. I use to get this a lot. My brain is on overload again, over whelmed, and this is not from Christmas doings as I am ready completely. But other things in my life. But I normally could handle. So this is making me concerned. I know they do not like you on the big guns like Imuran for to long but I can tell, I think it needs to be increased. Also balance is bad, almost fell into the Christmas tree, I don't know what I would have done if I did not catch myself from all the presents that were under the tree. Ripped a few open trying not to take the tree out. But it scares me. Also having constant headaches. Everyday. Nothing works for them, nothing. So I will ask him he is not my  neuro but he is the one that decreased the dose of the Imuran because the IVIG was working so well for other autoimmune diseases.


Well another Merry Christmas and a Healthy and happy New Year to you all and I appreciate you all reading my post. It gives me a purpose. :).


I love you ,


Susie

I thought this was such an informative article about two of my issues I thought I would post it and hope it helps others too, it does explain it to me why I feel the way I do. Sometimes I need that.

Top 10 Peripheral Neuropathy & Sjögren’s Facts:

1. Recognize that neuropathic pain is a chronic disease. Just as most causes of neuropathies and neuropathic pain in Sjögren’s do not come on suddenly, reduction of neuropathic pain can take a while.  

2. Initial and predominant neuropathies in Sjögren’s can occur anywhere in the feet, thighs, hands, arms, torso and/or face.

3. Many different symptomatic therapies for neuropathic pain are available. Both physician and patient awareness of potential benefits and side-effects can help tailor an appropriate approach.

4. While the class of tricyclic anti-depressants (TCAs) often constitutes a first-line tier of therapy in other neuropathy syndromes, the TCAs can increase mouth and eye dryness and therefore are not routinely used as front-line therapies in most Sjögren’s patients.

5. Electrophysiologic tests may help in the diagnosis of neuropathies affecting larger nerves which are coated by an insulator called myelin. However, neuropathies affecting smaller-fiber nerves that lack this myelin coating cannot be detected with these tests.

6. Special diagnostic tests, including the technique of superficial, punch skin biopsies (small biopsies of three millimeters and not requiring any stitches), can help in the diagnosis.

7. A relatively rare neuropathy can cause significant weakness in Sjögren’s patients. In contrast to other neuropathies which develop slowly, this neuropathy can present with very abrupt-onset of weakness. This so-called “mononeuritis multiplex” occurs because the blood-flow through vessels which nourishes nerves is suddenly compromised.

8. In general, immunosuppressive medications are almost always warranted to treat “mononeuritis multiplex” neuropathy. In contrast, the role of immunosuppressives is not well-established in other neuropathies, including neuropathies that cause pain but are not associated with weakness.

9. Sjögren’s patients frequently wonder whether pain associated with a neuropathy means they are at an increased risk for more severe motor weakness. While there are exceptions, if weakness is not present at onset, it most likely will not occur.

10. Neuropathic pain can be alleviated and assuaged, although there may initially be a “trial-and-error” process with different and perhaps multiple agents.

The information from this post, provided by rheumatologist

Fourth IVIG Treatment

I had my fourth treatment this past week. Wed, Thurs, Fri. It is Monday and I still have a headache. Now whether it is from the IVIG or some other wonderful thing I have, it is there, can not hardly see. I know I did not take it easy after the treatment that so many tell you to do, but no doctor has ever told me to go home and rest, it is just that you feel so crappy that you do. LOL. This time I felt like I was going to collasp. My legs still do not have the strength in them. I have done a lot, this weekend regardless, pushing it, it is this time of the year, and giving up almost a week a month drives me nuts. But if it helps it is worth it. The first two I had was like a miracle drug, I walked a mile, I did things around the house I have not been able to do, but now the last two are just sort of bla, do  not recognize any difference. I did read that there was a bad batch of IVIG and maybe that was me, I also read that a doctor had told one of his patients that it is like a crap shoot, because you have 1000 people donating their plasma and you never know what you are getting. That makes sense to me, but for 24,000 a shot, I would think I should be running a marathon by now lol. I feel guilty over the cost of this medication, I really, really do. I pray it helps me stop the progression of my autoimmune diseases and sfn.


I don't know if I am having a relasp of HE (autoimmune/ Hashimoto's Encephalopathy) or not. I have headaches the shooting brain pain, my legs are so bad, I can not walk around only in the house, my balance is iffy. My brain hurts. Truly it does. My eyes hurt. My rheumy cut back my Imuran to 25mg a day compared to 200mg I was taking when first dx with HE and myositis. But this has been a gradual thing, was on 50mg which seemed to be ok, but now three months into the decrease I am having these symptoms, and even dragging the right leg. I can not believe this as getting the IVIG should be enough but I guess it is not. I am going to try to hold out until I go see the rheumy in Dec, but if I can not I will email him and my neuro and see if they can discuss this between the two of them. I am so sure it is due to the lowering of the med. He wants me off because it does have serious side affects, such as cancer, so I respect him for wanting me off.


Well hope to write more later hopefully I will tell you all I am dancing, and singing, and walking miles lol
Susie

Another Week, Another Treatment

One more week to go. Another treatment of IVIG. This time it will be for 4 hours each day to help with headaches. So if it still is bad I will ask to go longer.

It is so weird the connective tissue disease that I have and has caused swelling in my hands for a few years now is getting better since the last treatment. I will say I did push those two days I had such energy and felt so good. Suffered with my good old joint pain and muscle pain, so will be more careful when I get the next treatment.  I know I just want to push it to fast, so hopeful, so excited over the possibility's of what I might be able to do again. I know I will still be chronically Ill but maybe with a little more water in the cup half full.

Lets talk about Hashimoto's Encephalopathy for a min. Still looking for stories of patients or loved ones for the 2nd edition to come out sometime next spring. We would love your story. Every time someone tells me they have bought the book and it has helped them as they do not feel so alone after their dx of HE. I feel so good inside. That is what it is about. Helping others who are dx with this rare disease. We now have T shirts that have our logo on them done and ready to ship to me to send out exciting. Then we will do a hoodie and caps. I am excited over this as I feel anything we can do to bring awareness is only going to help. We were also asked to speak to a convention of 300-500 student nurses next spring  how wonderful that would be to help bring awareness to these young and upcoming students. Maybe just one would help to recognize the symptoms of one patient who has HE would be so worth it. We will see it is 15 hours away from me. Our Non profit would have to pay for the transportation, but we will see what we can figure out. Maybe if we sell enough T shirts and sweatshirts, lol. But it is an honor to be asked.

We have gained so many more HE patients to the website since the book came out. Amazing. It is suppose to be so rare, so under dx yet we are seeing such an up swing of people being dx. There still are the poor patients trying to get dx, doctors who still say they do not believe in the dx, (what) how can they say that when it is recognized government rare disease site. This is where there is more need for education even for the doctors.

Well time to go, until we meet again,
xoxoxo susie

2nd Round Of IVIG Is The Side Affects Worth It?

Yes, Yes, Yes. The side affects are worth it. I did have the headache from Hell again, had to hide my head in pillows so no light would hit my face and eyes, could not move because of the pain. My pain pill did not touch the headache pain, took extra strength Tylenol instead. But here it is one week later, and I can tell you it is so worth how I feel.

Yesterday for the first time in abut two years, I took a walk that was about 1 mile long, yes I was so excited to go, I made it half way sat at a friends, for a few mins, got back on the road and finished the walk. It was so beautiful, sun shining, we were in the county, had the puppy with me on a leash. We looked at everything, cat tails, pussy willows, the golden fields. It was beautiful and such a gift to me. The IVIG has certainly helped me. I slept so good from physical activity then from physical pain. I did take my cell phone with just in case lol. But did not need it. YEAH.

So today I thought lets push it, went swimming for an hour. It felt great. But I do realize that two days in a row right now maybe a little much, as  my joints in my knees are acting up and am in pain right now, but you know what I do not care as it was all worth it. It is so encouraging.

IVIG only helps, research says, if you have autoimmune diseases for which is causing the small fiber neuropathy. This is unfortunate, as it could help so many. Also, the cost of the IVIG is so high that a lot of insurance companies will not cover  this treatment. This is too bad. It will add such a better higher quality of life.

It does take a week out of my life every week before I feel I can do much again. I do get a lot of the IVIG. A high dose. But they are now running a saline line with it, and next month they will be doing it for 4 hours a day verses 3 in hope that the pain wont be so bad. So 15, 16, 17 of Oct I go, and I know to expect the week after to be lost, but is it worth it? I will make it worth it. I will take more walks, clean my house, shop,. Yeah lets go.

RASH, HIVES, HE, IVIG, CONNECTIVE TISSUE?

Well now, lets see rashes all over my legs, on both arms, lets see what could it be? From the IVIG, the HE, Connective tissue disease, photosensitivity? So what is it from? Should I go to the dermatologist, the rheumatologist, the primary? Who should I see? I pray it is not from the IVIG for I would not want to stop getting that miracle treatment. But what ever it is I have had it for a week, slightly itchy but it reminds me of what I had back before all of my dxs of the autoimmune  diseases. I had a rash/hives on the back of my legs from ankle to butt, then on the arms, and it lasted for  8 months, yes 8 months, had treatments of creams, powders, pills, steroids, I had it all, steroids would stop the intense itching for about a day or too, but when the steroids were done the itching came back. So much worst at night. I stopped wearing pantyhose, tights, had to wear the loosest clothing I could find as not to irritate it more. So watching it close.

 We are taking a survey of symptoms on our Hashimoto's Encephalopathy page one of them is about rashes. Many, many of us had rashes that the doctors could not explain before the dx of HE. Weird, because why or what in the brain would cause this? Rashes I would think is a  connective tissue thing, so I know why I had it, but why the others, they do not have the issues I have just the HE so really why? I think as time goes on and more research is done they will find a connection that they do not know now.

Thoughts at large. Warning, lol. I want to know why? Why are people not as giving of their patience and time and love as I was when I was a young married woman. I have some personal family issues going on, and yet the people that I depended on and family members I trusted my life with and love with all my heart have disappointed me beyond words. I have always been there for all of them, no matter the cost to me. But yet now I am getting the "I don't want to hear it" Don't bother us with this any more" It upsets us too much. Well no one stops to think of what I have endured through the years and all the problems. It is a selfishness I never thought I would see from my family. I am hurt. First I am told they want to know what is going on, mad because I keep the issues to myself, then they are upset when I do tell them.
They obviously don't recall all the times I took with my sick brother, my mom for years, their own illness, and personal issues. But here I am Ill myself for which I hate to admit too, hate it. But they are causing more stress for me then I need, they are adding more to me, then I deserve by being selfish, and self serving. Yes I understand not wanting to think  about bad stuff things that make us upset, but I have had years of it, years, and kept going on, yet now, once again I am alone, dealing with issues, that everyone said they wanted to know, but really didn't.

That is enough of that. So one does not wonder why my immune system is so haywire. Maybe I should not have cared or took care of people I loved for all these years right, maybe I would not be so sick? But this is not my personality, my nature. I was brought up to care about people, love them all and I still do, even the people who hurt me, I pray for, and care about. So I guess things are just different now.

Now really that is enough, lol. Done, finished.  To all that maybe reading this that would be interested, we are now selling Hashimoto's Encephalopathy T shirts. They are available on our www.hesaonline.org  web site. They are very nice and would help to fund research on this very rare disease.

Hope all had a wonderful labor day weekend. I can not believe it is Sept 1, 2104.