Good News/ Bad News

[Convert_in_99]

I went to the doctor and got some good news: I am 100% Endometriosis free since my hysterectomy back in December 2015! :extrahappy: The two masses they found turned out to be ordinary scar tissue and not Endo.

Which leads me to the bad news. What the heck is causing this debilitating pain and symptoms?

We know for certain I have Fibromyalgia. But this is different. I have had chronic lower back pain from my time as a CNA for about twelve years that has worsened with age, but MRI showed no damage at the time of onset.

Who knows.

They are sending me to a pain management therapist to help me p(name removed by moderator)oint the source of pain and send me to appropriate specialist if need be and if not she will send me to physical therapy.

I don’t have high hopes for getting better at this rate. At least when I had Endometriosis there was a diagnosable and treatable cause. Now it’s just chronic pain with no known cause save possibly (but not likely) my Fibromyalgia.

Overall it’s been a rough day. :bighanky:

 

[Isca]

I’m very pleased to read about your good news, you must be delighted about that!

Your chronic back pain is a terrible thing to suffer, my husband has very similar symptoms and has had for many years. I hope the pain management clinician can help you to get the right meds and therapies to give you some relief. God bless you and yours.

 

[DesertSister62]

Posted by DesertSister62
I knew that there are many people out there who struggle with this, but I had no idea that it affected that many people, just in our own country. 73 million people! It’s totally mind-boggling! I guess I am bringing it to all of our attention. It seems to me that with that many people struggling with this day after day, that we as the ones who don’t suffer this level of pain, need to try to help carry this pain. How? I’m not sure, but I do know that I am going to be in prayer about it. I believe that if we have a willingness to try to help in this way that the LORD will meet us where we are. Those with pain are already doing all they know to do, but the rest of us, . . .Surely we could be of some benefit if we truly are supposed to be “Our Brothers Keeper!”

http://www.lovecrucified.com/a_images/icons and bullets/a_lc_cross_transp.gif
**
Dear Convert in 99,

Well, I did check out this situation as I explained that I would do. I found a Catholic group in Florida that exists for this very purpose. The name of the group is “lovecrucified” and it has been formed to help people become “Victims of Lovecrucified,” so that we would be able to walk along side the people that God places in our lives, and to ask God to help us help others to carry their pain. You can find them at this link;

The Lovecrucified Community
lovecrucified.com/

So, evidently it IS possible to help another carry their pain, just like Simon of Cyrene helped Jesus carry the Cross on the Way to Calvary. I have to admit that it is a little scary but no more so than what Convert in 99 experiences every single day of her life.

Perhaps others of you will feel called to this Charism. . .?

Here is their “Spiritual Battle Rosary.”

lovecrucified.com/prayers/rosary.html

DesertSister62**

 

[tawny]

Praying for your continued health & recovery.

 

[Bonnie]

Which leads me to the bad news. What the heck is causing this debilitating pain and symptoms?

From everything I’ve read about pain, the consensus seems to be that pain is weird. It can be difficult to impossible to find the cause. Which isn’t fun to hear. I remember my reaction when I was told nothing could be done about my debilitating back pain. Turned out that doctor was wrong - thank God! - but I was really depressed thinking I was going to be dealing with it for the rest of my life.

I hope you find an answer for your pain. :hug1:

 

[Allegra]

I was out of town over the weekend, visiting inlaws for a wedding and I happened to think of your situation and when I was talking to a family member at the wedding who is a nurse. Apparently, there is medical research that suggests that when some people experience traumatic pain over long periods of time, it can effect their nervous system and make them continue to experience the pain, even after the cause of the pain is gone. The nerves can even trick the brain into actually causing inflammation. When I heard that, I thought of your situation and wondered if this could be happening to you. According to her, there are treatments available, so seeing a specialist in pain management might really help, especially if your doctor is confident that there isn’t anything physically causing the pain. I’ve never had endometriosis, but from what I’ve heard, it’s the very definition of chronic, traumatic pain.

 

[Hail_Linus]

It is possible you have phantom pain which is pain in a part of the body that has been removed. You might be able to get rid of your pain with Eye Movement Desensitization and Reprocessing (EMDR).

I have a family member who had to have a part of his intestines removed. He suffered constant pain for years. He tried all the powerful pain medications but nothing worked. Finally we went to an MD who was convinced there was no physical reason for the pain so he referred us to a psychologist that practiced EMDR. After three 15 minute sessions (which I was present for) the pain was gone.

You can learn more at EMDR.com as well as find an EMDR clinician in your area.

 

[Hoosier_Daddy]

That’s too bad.

What are the next steps?

 

[slh3016]

Is your pain all over of just in particular areas? I ask because I, too, suffer from a lot of pain and it has been recently discovered that there is a 99% certainty that I have Ehlers Danlos Syndrome (EDS), which is linked to fibromyalgia and chronic widespread pain. Google it. When I read the symptoms, every random medical event and pain made PERFECT sense. Before discovering it, I felt like I was crazy and that no one believed me. I read the symptoms to my husband and he was like, “Oh my gosh, that is SO you!” Docs now seem to believe this, too. Knowing a diagnosis won’t change my level of pain, but it was certainly nice to feel validated and taken seriously.

Prayers for you!

 

[Bonnie]

And that reminds me that some pretty oddball things can cause pain. I can eat dairy in only small amounts. If I eat too much I end up with joint & muscle pain. Took me years to figure that out.

 

[Rosebud77]

And that reminds me that some pretty oddball things can cause pain. I can eat dairy in only small amounts. If I eat too much I end up with joint & muscle pain. Took me years to figure that out.

Diet is interesting. I can no longer eat fruit. Can no longer swallow anything bigger than a pea and meat is off the menu also now. Ah well, milk is OK!

 

[Convert_in_99]

Thanks everyone for the prayers and info. I’ve been doing some online research and found something that is another chronic pain disorder and many women who have Endometriosis and/or Fibromyalgia have it also. It’s a fancy name but really a simple problem. Not cureable, but symptoms can be lessened through diet, physical therapy and some surgical means in severe cases. I’ve had bladder and urinary troubles all of my life, but have no infection. It’s worth a shot. It’s called: Interstitial cystitis. I will discuss it at my appointment in two weeks. Wish me luck. Until then I must get through this one day at a time. It’s really painful. Thank goodness for pain meds!

 

[AClaire11]

Thanks everyone for the prayers and info. I’ve been doing some online research and found something that is another chronic pain disorder and many women who have Endometriosis and/or Fibromyalgia have it also. It’s a fancy name but really a simple problem. Not cureable, but symptoms can be lessened through diet, physical therapy and some surgical means in severe cases. I’ve had bladder and urinary troubles all of my life, but have no infection. It’s worth a shot. It’s called: Interstitial cystitis. I will discuss it at my appointment in two weeks. Wish me luck. Until then I must get through this one day at a time. It’s really painful. Thank goodness for pain meds!

I was diagnosed with IC after my laparoscopy (they looked for it while I was under). I’ll keep you in my prayers!

 

[Convert_in_99]

I was diagnosed with IC after my laparoscopy (they looked for it while I was under). I’ll keep you in my prayers!

Really! My NaPro Doctor didn’t even know what it was. I even asked, said he’s never heard of that.

It’s okay though I have an appointment with a Urologist on Wednesday. Hope he can figure out if I have it or not. Did you have severe pain with yours? I read it can cause severe pain. What are they doing for treatment (PM me if you don’t want to reply on this thread.)

 

[AClaire11]

Really! My NaPro Doctor didn’t even know what it was. I even asked, said he’s never heard of that.

It’s okay though I have an appointment with a Urologist on Wednesday. Hope he can figure out if I have it or not. Did you have severe pain with yours? I read it can cause severe pain. What are they doing for treatment (PM me if you don’t want to reply on this thread.)

The doctor who did my surgery specializes in pelvic pain and treats a lot of IC patients, so she did a hydrodistention to check for it. They gave me medicine through a catheter several times (instillations) and put me on pyridium, prelief, and aloe vera capsules. I also had to eliminate all acidic foods from my diet for a while (I think 3 or 4 months was what they suggested), which was awful for someone raised by an Italian Texan! These days I’m able to eat what I want and just take the prelief and aloe vera (but fewer capsules than before), but I know some people that have to be very careful with their diets for a long time.

Annoyingly enough, I never had pain from it until AFTER my laparoscopy! Apparently that isn’t too uncommon. I did have frequency issues, but no one ever told me that was an issue and I solved it by being chronically dehydrated But yeah, the pain could get pretty bad.

 

[ToeInTheWater]

I was out of town over the weekend, visiting inlaws for a wedding and I happened to think of your situation and when I was talking to a family member at the wedding who is a nurse. Apparently, there is medical research that suggests that when some people experience traumatic pain over long periods of time, it can effect their nervous system and make them continue to experience the pain, even after the cause of the pain is gone.

I totally agree, chronic pain is completely different physiologically from acute pain. I won’t get into the many different chronic pain syndromes, but all of them have that in common, though many have identifiable fixable etiologies as well.

Convertin99, I pray you will be able to find a quality pain management specialist - they vary widely in quality. The best really try to work with patients and meet their individual needs, as not all with chronic pain can be neatly labeled with a particular syndrome. The worst are essentially drug dealers who happen to have a medical license. There are also unfortunately many who have been scared off from doing their job thoroughly, out of fear they will be lumped in with the drug dealer types.

So it can be very difficult to find a good pain management provider. I hope and pray you will find one soon, hopefully on the first try.

 

[oldgraymare2]

http://www.lovecrucified.com/a_images/icons and bullets/a_lc_cross_transp.gif
**
Dear Convert in 99,

Well, I did check out this situation as I explained that I would do. I found a Catholic group in Florida that exists for this very purpose. The name of the group is “lovecrucified” and it has been formed to help people become “Victims of Lovecrucified,” so that we would be able to walk along side the people that God places in our lives, and to ask God to help us help others to carry their pain. You can find them at this link;

The Lovecrucified Community**
lovecrucified.com/

So, evidently it IS possible to help another carry their pain, just like Simon of Cyrene helped Jesus carry the Cross on the Way to Calvary. I have to admit that it is a little scary but no more so than what Convert in 99 experiences every single day of her life.

Perhaps others of you will feel called to this Charism. . .?

Here is their “Spiritual Battle Rosary.”

lovecrucified.com/prayers/rosary.html

DesertSister62

Hi DesertSister,

I “offer up” my chronic pain and other health issues, for the members of CAF, especially those who are suffering from any health issues, including any kind of pain. They are not alone.

I have similar health issues to some of our fellow members.

 

[Convert_in_99]

The doctor who did my surgery specializes in pelvic pain and treats a lot of IC patients, so she did a hydrodistention to check for it. They gave me medicine through a catheter several times (instillations) and put me on pyridium, prelief, and aloe vera capsules. I also had to eliminate all acidic foods from my diet for a while (I think 3 or 4 months was what they suggested), which was awful for someone raised by an Italian Texan! These days I’m able to eat what I want and just take the prelief and aloe vera (but fewer capsules than before), but I know some people that have to be very careful with their diets for a long time.

Annoyingly enough, I never had pain from it until AFTER my laparoscopy! Apparently that isn’t too uncommon. I did have frequency issues, but no one ever told me that was an issue and I solved it by being chronically dehydrated But yeah, the pain could get pretty bad.

Wow! Thanks for this info. A pelvic pain specialist sounds like what I need. I didn’t even know they existed. Hopefully the urologist knows about IC and hopefully I’ll be closer to finding a name for my pain on Wednesday with some answers on how to help it. Even partial relief would be wonderful! I may PM you with questions about IC if I think of any.