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Posted 11/9/2010 5:39 AM (GMT 0)
Hi, I am posting here but I realize this isn't just CFS.  Please forgive the long post. 

I have

  • Spondylolisthesis
  • Chronic Migraines
  • CFS
  • Fibromyalgia
  • Chronic Depression
  • PTSD
  • Anxiety

No I'm not going to kill myself as my children are my life and I could never ever do that to them.  It just seems that I forget how bad I felt before and when I am in such pain, I feel it will not end.  I'm a 40 y/o mother of three ages 13, 11 and 9, had an injury to my spine when my youngest was a couple of months old.  Other than the chronic pain in my lower spine/spondylolisthesis, shooting pains,  I was doing ok.  After I had an ESI, Epidural Steroid Injection I was in incredible pain and all over.  I had severe migraines, pain in my neck and shoulders, knots all over my body, exact pains in my extremities at the same time for long periods of time with knots, shooting pains in my legs and arms, painful breathing, excruciating pain rolling over, getting out of bed and or moving at all.  It was so bad I could hardly talk and I could not hold my head up without it shaking.  I was put on every prescription possible.  I've taken them all to some level I'm sure.  At one time I had 34 prescriptions on my end table which covered it entirely.  I went through every test you could think of.  The thought I had an infection in the spine after the shot, as well as numerous other tests performed.  I had to walk with a cane after being bedridden for a year.  I barely remember that year at all.  Very slowly, I began to get better.   I remembered wanting to take my life numerous times due to the pain.  It tore my marriage apart leaving me a single mother of a 2, 4 and 6 year old. 

I shed more tears those years than breathes I took.  I was majorly depressed.  I was a police officer for 12 years, from hero to zero and all because I pushed a stroller up a deep incline and literally popped my back.  I didn't want to live when I was hitting rock bottom of whatever it is which caused me to go completely out of energy to the point I wanted to avoid getting out of the bed and would literally remain there for days on end.  It was always and still is 9 years later when I get to the point I'm ready to end it all...snap a finger and I'm able to function like a human being again.  I continuously to get these knots all over my body.  It could be in the head area, mostly in the back and spinal area...also neck, but also in the legs.  A lot of times it just feels like bruising, but no signs.  I do have this extreme fatigue maybe once a month and I have discovered around that time of the month, but also it could not come around for some time and I wonder why I'm even on disability and feel guilty.  No worries, within time, I hit with something which takes me down again and reality hits...you can never know when it will strike. 

I do know stress sets off a lot of it.  Gosh, when I was married, my ex became so abusive mentally, emotionally it destroyed me and my self confidence.  I'm still going through therapy on that one.  My ex has made my life hell, as if I needed any help with that.  He is constantly harassing, controlling and impossible to deal with.  He is my largest stressor which I left my hometown of loads of support due to him.  I'm constantly falsely reported to CPS by him or to court as well as constant threats of being taken to those.  Everything has been unfounded, which his reports were so ridiculous.  He is constantly trying to get custody of them.  I'm scared to death of him.  Just meeting to drop off the kids weekly, I have anxiety and PTSD.  I'm trying to fix it all in my head, but it is impossible I feel as he is relentless in his verbal cruelty by calling me stupid, worthless, not sick, living off the government, and I could do on and on.

It is especially hard to plan anything.  I never know when I will get sick with the back, migraine, fatigue, body aches, knots, and whatever else may strike.  I really don't have anyone who knows how sick I really am or get other than close family.  I do not get out hardly at all at this point, as I have become so recluse so it is very hard to meet new people or make friends.  At times I feel so alone in this life.  I do not have anyone I know within an hour of where I live, so I don't even go to the hospital when it gets really bad any longer.  When no one sees or hears from me, that is of course when I'm at my worst.  My children have grown up having to take care of themselves at the times I'm so sick that I can't do anything.  I am awake and able to talk them through, just can't function.  My children know nothing more than my illnesses and it is more common than not when they get home from school, I'm in the bed.  I do worry about what they are thinking, but I constantly remind them of how this is an illness and as soon as I feel better, I will do all the things they love us doing.

There are some symptoms which I wanted to bring up which are strange.  I have had burning sensations on a specific area of my forearm and it would last for months, nonstop pain, to the touch, wind blowing it or the sun/heat.  It would then go away and come back.  I'm not sure what does that.  Also, I get migraines really bad.  One month I had to go to the hospital 6 times in one month for shots, one time twice in one day.  I have had the tingling, numbness sensation on my left side of my face around my left side of the lip, nose, cheek and around the back of the head and ear on left side.  That lasted a couple of weeks.  So irritating.  Even when I smiled, my lips and cheek area would not rise the same as the other side of my face.  I also talked strangely, like I had had a stroke.  I did a CAT scan and it was fine.  I have had this happen a couple of times.  I do need to keep notes, but I don't at all.

Thank you all for listening.

I'm just a hot mess I guess. :)

Posted 11/9/2010 4:06 PM (GMT 0)
I totally understand where you are coming from as I have some similar problems: joint pain, weakness, severe pain after working out, the burning sensations, difficulty talking, shaking, problems raising arms, holding things and chronic abdominal/back pain, etc. It's disheartening to think of never getting better or having improvement. Don't give up! Please do say which specialists you have tried... neurology? immunology? endocrinology? I read about this woman who went to 20+ docs before they found out what was wrong...
Posted 11/9/2010 5:13 PM (GMT 0)
Started out with chiro, then sport specialist, rheumatologist, neurologist, brain surgeon, pain specialist, but have been seeing numerous dr's in same field.

Also, I'm in my GAP with Medicare. No coverage on scripts now. Does everyone else have other insurance? I need to check into getting a backup source.
Posted 11/9/2010 5:25 PM (GMT 0)
Do you think it was the ESI that triggered the worst of it? Is that a treatment for spondylolisthesis? I know with the other issues they don't always have an etiology for them... at least when I was given a diagnosis of fibromyalgia, there was no rhyme or reason for it. When you see the doctors, do they at least offer some treatment that helps?

I do have insurance through my husband's employer, but it cost us thousands per year anyhow. We've met our out of pocket max actually. I do have a GI problem that they want to do surgery on, but I'm a little reticent since I had surgery for endometriosis and it did absolutely nothing. For me, prescriptions do more harm than good. I am on a PPI for stomach (result of years of NSAIDs) and some antihistamines (which even bother my stomach).

Do you have any good days?
Posted 11/10/2010 12:04 AM (GMT 0)
I know the shot put me down and created far more pain than I had originally. They kind of blew it off. They said they never have seen a reaction like mine. I know I was given a shot by a Dr. which was in training. I did feel the twing and I remembered moving. I had spinal taps when I had my three c-sections and I remembered them feeling about the same. I thought I could have been allergic to the steroid or the shot when in the wrong location. I have no idea, but I know from the shot...the entire body hurt when it was only my legs and low spine. The ESI was supposed to numb the pain or something. It did nothing to the pain only made it much worse and all over.

Over the years I had been through different therapies. I guess with quite a few things wrong with me, it is hard to tell what is causing what symptoms sometimes. I mainly stick to hydrocodone, soma, meloxicam and that is pretty much what I take on a completely regular basis. They are cheaper and I can usually get by even though the meds do not help my pain, just take the edge off for a short period of time.

I never had any moments without pain. I do however remember how wonderful that was, just didn't realize I should have taken advantage and been far more thankful than I ever was.
Posted 11/10/2010 3:14 AM (GMT 0)
I am sorry for your struggles. For me, I had a good day in July! That was it! My complaints are bearable since when I lay down I feel better, but ah for that day in July again.

I hope that you find relief, and when you do, share it with us!
Posted 11/17/2010 9:49 PM (GMT 0)
I'm sorry to hear of your pain, but I have reason to believe that the rather new (in this country, though rather old, really) field of ElectroMedicine holds great promise for relief. I recently had an F.S.M. (Frequency Specific Microcurrent) therapy tx from a doc in MA, and it worked! Just my neck, but I have multiple injuries that have never been adequately diagnosed/treated.

There is an excellent (and information-intensive) review article in the April 2008 Townsend Letter of Alternative Medicine for Doctors and Patients (just do a search for Healing with Electromedicine and Sound Therapies, April 2008, Townsend Letter, by Ninah Sylver, PhD.). The Tennant Biomodulator (one such machine) seems a reasonably priced unit given what it is supposed to accomplish (and I tend to believe it will, as it is also a form of FSM therapy), and the article gives telephone #s to pursue your inquiries.


There are a plethora of machines available (it can be confusing), but this Tennant Biomodulator seems well reviewed, the inventor is a surgeon, and his explanation of the causes and effects of Chronic Pain (and Fatigue) upon the body's regulatory functions is excellent, and should in and of itself give you relief through understanding that your suffering is REAL, UNDERSTANDABLE --- and TREATABLE! I suffer, too, and have for 45 years! But the technology works! I am still in process of trying to determine which machine to buy (and how to get the $$, as I am disabled by these injuries), and my doc has said she will also try to find me a home machine.

The Tennant Biomodulator is easily operated, after a little training, by a layperson, so you could treat yourself! And the range of conditions and pathologies it addresses are astonishing, though if you read the Townsend article and come to understand how the body works (a Bio-Chemo-Electro-Mechanical Organism), you will understand just how these seeming miracles can be accomplish.

At this point, I am impressed by the Tennant Biomodulator, but there are a range of Electromedical machines that are worthy of research and understanding. But by all indications, the Tennant machine could be your answer. Research well, and try, if you can, to locate a practioner and TRY IT BEFORE YOU DECIDE. I have already had tx from my doc's machine, so I know FSM therapy works!

Trust, but verify! If you do, you will likely be the beneficiary of your determination to find a solution to your suffering. The body, when ENABLED, will heal itself! Believe it, because it is true, and Medicine ALREADY knows this fundamental truth.

Best wishes, to you and to all who suffer,
Self-Helper
Posted 12/10/2010 1:48 AM (GMT 0)
I can relate almost completely....the pain, the fatigue and the 3 kids part! I had a different course but similar outcome. I suffered from birth with chronic eczema....something that was supposed to be caused by allergies, but no allergist found out what caused mine. I became an RN, worked hard and researched my own theories and avenues. During those years (BK- before kids) I had energy but suffered from depression and pain - the pain from the constant infections and burning skin - and the depression from the humiliation of being asked daily what disease I had as I looked like I had either chicken pocks, measles, etc. Anyway by the time I got married and had 3 kids in a span of 4 years, my life turned upside down. I could not function at all. My eczema was head to toe open sores, severe itching, burning and pain. The fatigue was so bad I wanted to die on a daily basis. I took a year off with my 3rd pregnancy and was supposed to return to work 3-4 months after delivering, but my health detiorated to the point where I couldn't even leave my house let alone work. My husband did everything...he picked up the extra hours working 60-72 hours per week, doing all the laundry, all the shopping, and often helping me to care for the kids. We were both sleep deprived and frankly barely surviiving. But we somehow managed to pull together and focus on finding a cure as the doctors' treatments were only making me worse. I saw so many specialists and they all said I had chronic staph on my skin. All the antibiotics did was make me worse. By the time baby# 3 was 15 months old, I was supposed to be admitted to the hospital for IV auto-immune drugs that are given to bone marrow transplant patients as my condition was so severe and they claimed my immune system was severely out of control. Well hubby and I decided that was too dangerous to risk. So we left our house, packed up our kids and headed from NY to Arizona. My husband worked contracts and I started a search for natural cure. While out in AZ I found out I was nearly in liver failure. I took herbs for that (milk thistle) and lo and behold my skin started clearing up. But the faitgue continued. I have had a VERY long past 4 years of finding a cure, but I am finally to the point where I have gone back to work (my husband needed a break from working mad hours) and my fatigue is not cyclic in nature....I know when to expect it and how to handle it. The skin problem comes and goes on a very low level (nothing that causes me severe pain) and I have learned it is all diet based. So if I stay to my strict all natural way of eating, my skin stays clear.

The worst part of it all was watching my kids suffer for my suffering. They have only recently begun having more and more fun because I can now do more with them. They no longer have to hear the same old excuse "Mommy doesn't feel well today". Some days they have to hear it, but about 75% of the time I am functional and enjoying life again. I could go on and on about what helped me....but I know that everyone is different in their beliefs. As a nurse I was originally focused on modern medicine finding a cure for me. But when they failed me (for 30+ years) I took my health into my own hands and learned everything I could about why I was so sick. I am more of an extremist, but I had to be my own advocate or face the consequences of a failing medical system. I chose to eat all natural - and I mean ALL natural.....down to raw milk, grass fed beef, raw butter, literally grinding my own wheat for bread, and so on. It was very hard to learn and do....it was a bad cycle....couldn't do the things I needed to do to get healthy because of the fatigue, but those things would help end the fatigue. It was a battle with my husband and kids to change the whole family's diet, but thankfully they were supportive (yet whiny and grated on my nerves). I thought at times I was going to scream from being so tired and trying to find a cure and taking care of 3 kids AND traveling around the country every 3 months. I love traveling and of course I love my husband and kids, but the despair of the possibility of failure weighed on me every minute. Would the diet and energy work and supplements help? Or would I just stay the same or worst yet, go down hill?

I may not understand the PTSD from dealing with an ex. If it were not for the support of my husband, I would have failed for certain. You MUST be a very strong woman, despite your medical issues. You need to recognize that first and foremost! Second, try looking into alternatives to modern medicine. I am forever thankful I did. It is lonely sometimes being away from family as we travel, but my husband and kids keep me going. I have learned that we all need a strong support system to get through this thing called life. Know that you are NOT alone! If you ever want to chat more, let me know!
Posted 1/9/2011 5:49 PM (GMT 0)
I don't know who I am anymore.I don't know this person who is in all this pain and taking pills everyday.I miss my old life.I hate these pills I hate this painfull weak life and I hate myself.90% of my life is spent in bed. I feel so bad for my family that has to put up with me.This isn't who I was before.I use to get up in the morning and never sit down till I went to bed at night.I hate this life and myself.It's only going to get worse...I'm sorry for whinning.forgive me
Posted 1/18/2011 5:16 PM (GMT 0)
Can you tell me the details to get relief from the "Chronic Syndrome"?
What medicine I can take?
Posted 1/23/2011 8:37 AM (GMT 0)
darlyn..I understand..I know where your head is at and you have to be strong even though it taks so much energy! I have been there, finally checked myself into thr hospital and got some help..pain everyday people just do not understand, I do, i really do! Maybe some time -out for now. They got my pain under control and found I had a dep[ressive disorder, the meds actually help with the pain..do not give up! you are not a burden to yur family, trustme they love you and want you to get help...I have lived with pain for yrs, I wanted to give up, but what I did to them, I can never forgive myself..so if I have to be in bed and be depressed so be it..go to the hospital! go! trust me!
Posted 3/2/2011 4:07 AM (GMT 0)
Girl, I understand... I mean the living part... I feel like that alot too and have alot of the same problems you have too. But like you said, you have kids. I thank God everyday for my babies, because THEY are why I keep going. Thats it. I am only 30 with 3 kids and can't believe that I can be this sick. I am so tired of it. I hope that you start to feel better and that maybe you can get some sort of relief soon. If anything at all, please know... your not alone. The reason I found this site is because I am feeling alot like what you posted. As much as nothing anyone can say can take away the pain and horrible depression... I guess for me it has helped to learn that I am not the only one suffering from these horrible symptoms. God Bless you, and your children.
Posted 9/25/2011 3:49 PM (GMT 0)
I  was wondering how you were doing. i just noticed your post right now  !  I went through a similiar experience and also felt like i wanted to die. I found out what was wrong, being my own advocate and a nurse I figured it out ....NOW my mission is to help ALL who have had epidural steroid injections and  are suffering the same as I am/was. 

C

Posted 10/17/2011 12:09 AM (GMT 0)
"retmomcop"......I'm sure you've tested negative on prior elisa tests for lyme disease. But no one may have
told you how often those have false negative results (60% or more). If you don't have lyme disease I'll buy you gift certificate for dinner. With all your symptoms, both mental, muscular/skeleton and neurological(bell's palsy) you are
a poster child for mis-diagnosed lyme disease. Find an experienced LLMD (lyme literate medical doctor), and
get a CD57-NK test from labcorp. If you are not below 60 on that test, send me a PM and tell me where you want to eat
a free dinner. I'm not a doctor but have suffered a lyme education the past 3 years. Everyone of your symptoms fit the
pattern. It's going to take years to cure you but at least you will know what you are fighting. God Bless.
Posted 10/17/2011 12:37 AM (GMT 0)
Well to this day I have been diagnosed with Sec Adrenal insuffic. My cortisol levels were .8 and and I am hypothyroid with a TSH of 7.9 I am currently on steroids (like an Addisons pateint ) and synthroid for m thyroid and yes Lyme was negative. Never heard of CD57 thats great Knowledge thanks !!
Posted 10/17/2011 1:02 AM (GMT 0)
Google it....CD57 NK is a secondary immune system marker that is very reliable for lyme. It's less reliable evaluating
treatment protocals. The sad part is that when doctors give you steroids to reduce inflammation, if you have lyme you will
get worse not better.
Posted 11/21/2011 12:33 AM (GMT 0)
I have to weigh in here with washem..............so many doctors made all kinds of non diagnosis or wrong diagnosis
for me for over 20 yrs.
It ended up being lyme and multiple infections.....I never saw one bullseye.
All the neurological damage , the burning , the arthritis type pain, phantom pain,
complete exhaustion, migraines that were like mini strokes all this went on.

every natural and regualr medical specialist..........and one stool test from metemetrex labs
came up with these bizzare parasites which had me going to the tick borne specialist.

I pray that every person on here with EBV or all these neuro and fibro type things become more
agressive in looking at what I never wanted to look at..........lyme disease.

My Father had lyme and was as sick as me and I kept on saying I had an inherited condition from my Dad.
I was so blind I never put the most obvious two an two together...that WE BOTH had lyme.

It was something I never wanted to even know about because the general consensus back then was..
Lyme?? there is no test for it?? (that is what people say in NY)

Or Lyme? it is mental.
or all kinds of ignorant statements.

How could chronic fatigue and fibro be such a mystery???
There are things about the CMVR and the Fry bug coming out of research but finally lyme is seriously being looked at.
Now ther is about 6 books on lyme.. 10 yrs ago there may have been ONE.

Leave no stone unturned. the $399 I spent for that special DNA stool test was the best money I ever spent.

God Bless you all and Happy Thanks Giving

Bucci
Posted 12/23/2011 12:56 AM (GMT 0)
I usually post in the Fibromyalgia forum on Healing Well.

Anxiety, depression & migraines are common in Fibromyalgia. As you are probably aware, your ex isn't helping as he stresses you out so badly & stress exacerbates the symptoms.

I know when he says those hurtful things, it's like a dagger in your heart. It is too bad he can't see that by bringing you down, he is hurting his kids too. At least you aren't wasting any more time with him.

There IS a place to get help with the prescriptions, but it has slipped my mind (fibro-fog -- hello! lol!) but I will try to find it & be back with that information.

But KNOW, please KNOW, that you are dealing with pain & stress that would crush many. You are strong or else you wouldn't have come this far.
Posted 12/23/2011 12:58 AM (GMT 0)
needymeds.org/ is the website - hope it helps!

Post Edited (applevenus) : 12/23/2011 7:22:04 PM (GMT-7)

Posted 12/24/2011 2:31 AM (GMT 0)
Hey, me again...I had another idea. I read over your original post again. I think a lot of your anxiety will be relieved if you do more to educate yourself. I spent (probably too much) time researching Fibromyalgia (a good bit of the reason for that was denial) but the more I read and learned, the more I could see that Fibro was what I had. It could not be denied. So acceptance has helped. I suspect CFS as well. So I plan to learn a lot more about it, too. Much of what you have - those knots - the tingling, the burning feelings, etc. are very common in Fibromyalgia.

If you knew all the weird things that are possible to happen ahead of time, I think it would really help you to take them with a grain of salt when they happen. In my case, I'm kind of like (to the symptoms) "Oh, why hello, I was expecting you to pop up at some time!" -- don't get me wrong, I'm not greeting the symptom happily, but why cause myself more stress and pain, when if I try to see it with a sense of humor, I feel better more quickly instead of making my condition worse.

The knots you have are the "trigger points"...there are about 18 in all. Some people have 11, some people have 18...I have 16 of them. I found that self massage helps a lot. Use circular movements. Look up YouTube videos about self massage for Fibromyalgia. There are also helpful tools sold on Amazon that can help you reach the knots on your back.

I finally decided I wouldn't get frustrated that there is no "cure" to completely get me back to the way I was before. I am this way now. I don't have to give in to it, but I do have to accept that I cannot do everything that I used to do before, or in the same way.

A motorcross expert was being interviewed and asked how he was able to ride so fast between trees without hitting the trees. He said he looked for the spaces between the trees, never at the trees. That's what we should do, look for the openings...look for things we CAN do, don't focus on what we cannot.
Posted 12/24/2011 8:02 PM (GMT 0)
Had time to read over all the replies. I agree, good idea to get tested for lyme. Most people with it don't remember having a "bullseye" rash.
Posted 12/25/2011 4:59 PM (GMT 0)
Self helper!!!
please email me! I live in Mass and would like to try a frequency machine before I purchase. What MD did you see?
thanks!!
Posted 2/28/2012 12:25 AM (GMT 0)
I also suffered unbearably from CFS, Candida, Allergies, Insomnia, Depression, Psychosis, and the list goes on and on. I also kept going for my children and family because my dad took his own life when I was a child and the devestation that caused for countless lives has made that "not an option." Because of this I tried every medication endless doctors gave me and even agreed to ECT treatments. In case you don't know what that is, it's shock treatment. All these things did was leave me even sicker. Every day I felt like I was being tortured and fortunately I had my husband, sisters, and cousins who stepped in to take care of my family and home because I was bedridden for about 6 months. Couldn't even get up to take a shower. My husband would have to carry me in and wash me. I can only imagine trying to carry on without support. I admire your strength. The reason I'm writing is because I have been able to recover about 75% at this point. This took years of trial and error, but what I can tell you is that medications only made my situation worse. I recovered through nutrition and some supplements, although not a lot, as most didn't help at all. The key was finding the best quality food possible, and through trial and error, found what helped. I know when you are sick and have children to take care of, without even considering the poison the ex is heaping on you, there is little energy for that. I would encourage you to spend time finding out how the body works, and what is happening when it doesn't work. One of the best explanations I have heard about this is from Dr. Jerry Tennant. He was bedridden for 6 years (if I remember correctly) and was able to heal himself. Affording the food and perhaps some other methods of treatment may be financially unfeasable for you. If so, the cheapest approach I've seen to address the problem can be found on the site sicknesshope.com. I don't love some of the attitude that comes across there, but the information and approach have helped me a great deal. It's really a matter of learning how the body functions, what makes it sick, and what makes it better. Your body needs every essential nutrient to build healthy cells and maintian a proper pH and cell voltage. Without these things, you will not get better. Research how to accomplish this. Quality of food is everything and treatments that can help raise the voltage of the cells can speed healing. If you can't afford treatment or devices, look at the site speedhealing.com. They used to have some videos on youtube that were free. I don't know if they still do. Practice QiGong. It is gentle and helpful. It is not a short process to heal a very sick body, but if you supply it with the right things and are able to afford some treatments to speed the process, it can be done. I know what it is like to suffer for years. I don't want that for you.
Posted 8/10/2013 10:28 PM (GMT 0)
I know the original post was in 2010 but I hope someone sees this. I know how you feel. I'm about to turn 50 years old and have been living with pain due to a back injury 9 yrs ago. This has been the worst 9 yrs of my life. I'm in pain 24/7. Some days so bad I can't/won't get out of bed. I'm so tired of being in pain and not being able to do or enjoy simple things in life. I have 2 daughters & 2 small grand kids that I want to enjoy life with but can't. My kids and grand kids are supposed to go on a cruise in 11 days.  I tried today to go to a neighborhood cookout with my boyfriend of 10 1/2 yrs. I had to leave early cause of pain. Just standing was way more than my back will allow.

I'm sick of just wanting to do simple things that I should be able to do at my age. I'm on a fentynal pain patch & am up to 125mcgs now. That's 2 patches plus pain pills for break thru pain. I've tried the steroid shots in my back too. I was bedridden for days after each time I tried it.

I love my kids & grand kids and they're the only reason I've held on this long but I can't take it anymore. I have no one to talk to and have to hide how bad this really is. It's so hard to deal with this all the time.  How can you fight this when there's no hope of it getting better. Only SOME (few) tolerable days.

I found this site out of desperation looking for somewhere to vent. If I try to talk to my Neurologist he says I need to talk to a shrink & won't listen. Because this injury happened at work workers comp is my only insurance and they won't pay for a shrink. If I try to talk to my boyfriend he gets pissed cause he can't fix the problem. I can't talk to my kids cause its unfair to put this on them. I have tried to deal with this pain and I'm sooooo done!!! I hope for you and everyone else in this pain boat finds some help. 

To my daughters Tiffany & Fraz and my grand kids Skylar & Grayson. I love you all more than anything.

To all Dr's and VERY irresponsible employers with unsafe environments. ROT IN H..l!

I'm very sorry but I had to edit your post - see rule #1.  I hope you understand. 

Debbie

Post Edited By Moderator (Acheybody) : 8/12/2013 12:32:08 AM (GMT-6)

Posted 8/10/2013 11:15 PM (GMT 0)
Hi FiestyInPain,
I used to feel so down about all my health problems too - especially the pain! Sometimes I still don't feel that great :( I am really sorry that everything seems to be going wrong for you right now :( Please try to find a purpose to live for. I decided to become an Occupational Therapist and over the last couple years that has really helped to keep me going. I decided to use my illness as a way to learn how to manage a chronic condition so that I will be better prepared to help clients in the future.

I'm just going to list a few things that help to ease my pain, fatigue, anxiety, etc. In case you haven't tried these things yet.
Alternate rest with activity.
Magnesium malate.
MSM, glucosamine and chondroitin
Greens powder - wheatgrass, barley grass, chlorella and spirulina
Moist heat - hot baths / showers, heat packs
Music - for me, listening to Andre Rieu and playing the piano
Pets - in my case, a puppy. Looking after him takes my mind off my own suffering. And he motivates me to exercise, which previously seemed a nearly impossible task.
Reading uplifting books
Mindfulness meditation and prayer - pick one or both, either stimulates the same area of the brain that helps relieve stress
Cognitive behavioural therapy - I've been doing it from a book, but soon I'll be going to a social worker for it
Doing a little bit of work/study - I study a tiny bit of uni online, as much as I can handle, which helps to get me going each day because I know I'm working towards my Occupational Therapy degree.
Watching comedies
Not eating gluten and eating a low-FODMAP diet (this one may not be helpful to you, but it is applicable to me)
Eating organic, unprocessed food; no additives; no cane sugar
Vitamin B complex
Vitamin D
Addressing any deficiencies - in my case, iron and ferritin
Cocoa powder - organic, raw. In smoothies and homemade hot chocolate drink.
Getting to bed by 10pm and following good sleep hygiene
Using my iPhone to tell me when to do things - I use music as my alarm tones so it's soothing rather than disruptive
Nature's Harmony music combined with fragrance sticks or incense helps to create a nice environment to help me relax or sleep.
Seeing an Occupational Therapist
Bach flower remedies

I hope at least one of these ideas helps to ease your suffering.

I really do feel bad for you. If there's one thing I have learned though, it is that allowing myself to throw a pity party is a very bad idea. It's one of the reasons I bought a bundle of joy (puppy) - I spend my time thinking about him instead of myself so much.

Never give up!
All the best, Jasmine :)
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