Chronic Illness Sucks!

[deleted account] ( 20 moms have responded )

That may seem like a no-brainer but when you're in the throes of it, that's all you can say.

I've been dealing with serious chronic pain since October 12, 2008. I woke up with pain like a kidney infection and went to the doctor the next day. I've been hospitalized, been injected, been poked, prodded, misdiagnosed with Crohn's Disease, put on wrong medication, etc. I'm just so damn tired of it all!

I left my abusive husband in September 2009 and have been working hard as a single mother ever since. There's no income but mine and I'm trying to raise my son (not the abusive jerk's son thank goodness). I have FMLA but it doesn't pay.

I'm sick to death of doctors who tell me they don't know the answers but here take this. I've been on so many drugs since this started. I haven't gone a day without narcotic pain medication for almost 3 years.

When the pain hits, it's like being in labor again. It's crampy or it's sharp throughout my lower abdomen and my lower back. I've had a colonoscopy which revealed nothing but the stupid doctor told me I *might* have Crohn's and put me on Pentasa for a year and half before I said ENOUGH and got a second opinion from a guy who looked at me in confusion and said that NOTHING in my colonoscopy even remotely resembled Crohn's. He took me off that medication and I resumed a normal diet (long story there). I've lost track of the medicines I've taken. I've learned that Gabapentin makes me sleepy like no one's business. Lyrica turns me into a brainless boob. Pentasa made my hair fall out. Prednisone gives me insomnia. Percocet made me stoned. Now I'm on morphine which gives me hallucinations and FATIGUE FROM HELL!

I've had more ER visits than I can count and I refuse to go to an ER ever again unless taken against my will. The last one (I was having a SEIZURE) had a nurse who thought it was funny to imiate my body shakes at the nurse's station. They treat me like a drug addict and I never take more medication than I'm supposed to - NEVER!

I've had spinal injections from a pain mgt doctor who thought it coudln't hurt to try. They did nothing but were so painful that I threw up.

Nobody knows what's wrong with me. I've seen the psychiatrist who said yes indeed I'm a messed up woman (Borderline Personality Disorder) but fortunately also said my pain was real and my depression will go away if I can get rid of it. Trouble is my regular doctor told me to my face that I'm simply going to have to live with this because they can't find what's wrong.

I've been to a urologist, obgyn, neurologist, gastroenterologist (2 different ones), spinal surgeon and pain management. Who else do I try now?

My work is wonderful to me but even they only have so much patience and my coworkers (also wonderful) have to take up the slack when I'm either in too much pain or too exhausted to rise from bed.

Then there's my poor kid. He'd had to help me to bed, pick me up off the floor when I'm so exhausted that I fall. He's had to learn how to shift for himself. Some of its' good, he's learned how to cook (and is really good at it, you should try his roast beef). He's learned how to take care of laundry and does his chores to keep the house clean. But I feel terrible. I never have the energy to take him anywhere - even his tae kwon do classes.

I can't date because who wants to date someone like me? I never know if I'll be able to pay my rent from month to month. I keep the internet only because I sometimes work from home when I'm too sick to go in but ok to handle phone calls (I work for an HMO in the call center). My family can't help. My father is in an assisted living facilty and has a form of dementia. My mother is also chronically ill. My oldest brother lives in another state and he would't be any help and my other brother is out of town for work pretty much all year round. My friends can only do so much and I hate to ask them for more. I dont' talk about my illness with anyone because after almost 3 years ,who wants to hear it? I can't go to counseling because I have massive trust issue with mental health professionals (due to trauma as a child and my BPD). I feel so alone all the time and there's no end in sight.

I used up all my savings last year for the divorce and other legal issues from the ex. I have virtually NO money for my son's education. His father faithfully pays his child support but that ony goes so far.

I'm just so depressed.

I just needed to vent -thanks for listening.


Kate CP - posted on 05/04/2011




This may be totally obvious and kinda stupid, but has anyone checked you for PID, ovarian cysts or cancers, or endometriosis? It could also be pancreatitis with deferred pain. I had that in the hospital after I had a scope done and they thought I had an appendicitis. Turns out my amylase and lipase were through the roof.

Pancreatitis pain is some of the worst pain you will ever experience. It's as bad as gallstones...worse than labor. And I've done both. :/

Firebird - posted on 05/03/2011




Have you considered a naturopath of some sort? They might not be able to tell you what's wrong, but it's possible that chiropractics, acupressure or acupuncture could at least help keep your pain under control. You seem to have been through all that western medicine can offer. It might be worth your while to try somethings that worked before we had pills.

Kate CP - posted on 05/08/2011




No, the best way to check for pancreatitis is to check your amylase and lypase which is a blood test. When I had a scope done it was to widen the opening to my bile duct from my liver because I was getting blockages. Turns out you can get gall stones even if you don't have a gall bladder. :/

Also, I would ask for an ultrasound of your abdomen (upper). They can check your spleen, gall bladder, stomach, and pancreas that way.

Lissa - posted on 05/04/2011




I just want to say your friends are there to lean on no matter how long it's been going on, if they are not there for you they are not true friends, speak to them ask them for help. I speak from the experience of being that friend for two friends who have M.E one who as yet is undiagnosed and my disabled husband. I am there for them no matter what time of day or night it is and whether it's the first time in a month or the 5th time in a week they have asked for help. Your friends do care, tell them how you feel, they would probably be upset at the thought you feel you don't want to talk to them about it because you feel you are always on about it.
I'm sorry I don't have suggestions, I was going to suggest hypnotherapy but with trust issues that may not be for you. Have you considered acupuncture to try and help with pain management?


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Barb - posted on 05/09/2011




I'm thinking the same way Kate is.

I had my gall bladder removed in 05 and have been in chronic pain since. My bile was sludgy, they did what is called an "ERCP" Like what Kate was saying, they put shunts in to open up your bile ducts.

one of the best things i did for myself was to take a nutrition class. I found that my liver cleans my blood in two stages, and if i don't have enough omega 3 fatty acids, it will release the toxic bile into my gall bladder and biliary ducts which empty into your duodenum (part between your stomach and small intestine) It is suppose to mix with your fattier foods along with the digestive aids of amylase and lipase. But if the biliary duct is clogged with sludgy bile or a gall stone, the amylase and lipase will start digesting your pancreas. And that is some painful ass shit!!!

I've changed my whole life since 2005. I don't eat meals that have over 5 grams of fat saturated/trans fat in them. I don't eat processed foods (except for brummel and brown yogurt butter) It's a lifestyle change forever.

The ultrasound of the abdomen checking the pancreas is called an OGD. But it's the same routine as the upper flashlight tour.

Have your liver panels done as well. (blood test) along with the amylase and lipase

It does suck, it sucks big ole donkey dicks!!

Jaime - posted on 05/05/2011




Jen, I am sorry to hear that you're having a rough go right now. Being in chronic pain is awful. Since having my son, my knees have taken a beating and up until just about a month ago I couldn't walk far without having to suffer in pain for the remainder of the day. I can't afford much either and I'm grateful that the pain has eased up on its own, but I wanted to suggest to you that you try chiropractic. I know it's not pharmaseutical medicine, but perhaps you are in desperate need of a full body adjustment to get rid of the toxins and realign your spine, etc. I don't know if you've ever considered it or if it has been recommended in the other comments on this thread, but I would suggest shopping around and setting up a consultation with a might be exaclty what you need. My best friend's friend from high school had chronic pain in her joints from a young age and it prevented her from going to college and taking the metal smithing course because it involves working with your hands and she simply could forward almost 10 years and she had an opportunity to see a renowned chiropractor, who diagnosed her with having 16 of the 18 diagnostic factors for fibromyalgia...since being adjusted she now only has 1 factor and is pain free! I'm not saying it will work for you, but it's worth a shot if you're in that much pain. I really hope something can be done to help you. Keep me posted :)

Amber - posted on 05/05/2011




Ya, he said he's not sure that it would be the answer to the problem, but that was something he didn't see a test for that he would be interested in seeing if he were the doc on the case.
Keeping my fingers crossed that it can maybe solve something or be helpful in some way!

Sneaky - posted on 05/05/2011




Can't I have a girl crush on more than one person? I'm pretty sure there is enough of me to go around :o)

[deleted account]

Yes, unfortunately I've seen 2 obgyns and both ruled out any womanly part issues. In fact, I was trying to go to the pain clinic at Strong Memorial Hospital's pain clinic and they insurance company made me go back to the obgyn again to rule out that stuff. Is the upper endoscopy the one that checks the pancreas?

[deleted account]

No, they've only done an MRI on my lumbar spine. I'll ask my doctor about it. It certainly couldn't hurt to 'ride the tube' again.

[deleted account]

Tracey- I'm jealous! And here I thought your girl crush was on ME!!! ; ) ♥ Mwaaaaahhhh!!!!

[deleted account]

Although I don't really have an words of advice in the direction of what could be causing the pain, I can totally relate to what you're feeling. I have AAHA which is an autoimmune disorder that effects my blood and bone's extremely painful. While there are days that I can run a marathon, there are many days where I can't even walk. It sucks, to say the very least. And being on pain meds long term has it's own demons, so to speak. Sucks, sucks, sucks, there is no other way to say it, it just effin sucks. ; ) ♥

Sneaky - posted on 05/05/2011




I was going to say what Joanna said re pain management :o) I have a girl crush on Kate because everything she says rocks! And I just want to add - vent away. That's what we are here for :o)

Amber - posted on 05/04/2011




He wants to know if you have ever had a MRI on your brain and spine? He said there could potentially be something causing pressure on your spine, but that without seeing your charts he can't really think of anything else that the specialist didn't test for. And that it sounds like they did a thorough work-up from the tests they did, but without the results he couldn't say much. He's curious about the brain though.

[deleted account]

Thanks Amber, here are the tests that I've had that I can remember.

Multiple CTs of the abdomen with and without contrast
2 Lumbar MRIs
Bilateral Retrograde Cystoscopy
Nuclear Renal Scan
Flouroscope on the lumbar spine (during the injections)
Upper & Lower GI series
Breath test (I don't remember the name but it's where they give you this solution to drink then make you breathe into a bag to see if there's certain bacteria in your stomach)
I'm negative for H-pylori
a lot of bloodwork
upper endoscopy
occult blood
pelvic exam
transvaginal ultrasound
abdominal ultrasound

Any suggestions would be wonderful. Thank you so much. :)

Amber - posted on 05/03/2011




I'm going to try to ask Chad about this when I talk to him tomorrow. I don't think he'll have an answer for what it is, but he might be able to come up with advice for what type of specialist could potentially help, or tests that he can think of. I think that he has databases that he can put symptoms into and see potential diagnosis....

I don't know if it will help, but if he can come up with anything it might be worth it.

[deleted account]

Thank you for your kind words Louise. My son goes to his father's every other weekend and he takes him to his classes now that I can't. I don't know about going away that long.

I've had 2 MRI's actually. :( Both came back with only mild degeneration in my spine. I've also had enough cat scans to make me glow-in-the-dark.

Louise - posted on 05/03/2011




You really have been through the mill havent you. You need to take time for you because you have been through so much. Could your childs father take your son for a week or so to give your son a break from being your career and give you time to rest. Maybe shared custody for your sons sake would be good if possible so that your son has time to go to clubs and do things that his age group do.

As for your pain i have no clue what is causing it. I think really you need an MRI to see if there is anything out of place. It is so annoying that with all todays technology they can not help you. Stick with it though one day somebody will be able to help you and you will be able to live your life to the full again. I hope they will be able to help you soon. Also see if there is a cronic pain support group near you where you can talk things through with others in your situation and maybe they will be able to offer you help and support.

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