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SO SICK of all the pain!
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calleryblossom posted:
I've been a chronic pain patient for several years now due to pain in my back, hip, & leg + fibromyalgia. To top it off, for the past year or so, I've had some problems with really awful pitting edema. It used to show up & then disapear every couple of weeks, but now it' s present 100% of the time. It is mostly in both feet, ankles, legs. I can feel it in other places at times too, in my head even! Sometimes I can' t wear a headband in my hair because I can feel the liquid under my skin being pushed in. I wear very loose, soft ones that I never had problems with til recently.
GP did some thyroid, kidney, and liver tests, which came back ok. Rx'ed me some blood pressure meds, they reduce the swelling just enough so that my skin doesn' t feel so stretched out that it is going to crack open. I came back to check in, all he did was refill the med for 6mo and say I had "chronic veinous insufficiency" & watch my salt intake, take the meds & put my feet up whenever I can..... I have the worst 2 year old ever...that' s hilarious...put my feet up...ha!
GP offered no other options up but through my own net research & chatting with my PM about it, I've learnt options exist. I'm going to see a vascular surgeon as soon as I can because there' s a chance I need surgery to correct it.
So back to all the other pain, PM has me taking the following:

10mg Methadone x 5 times a day
10mg Opana/Oxymorphone x 5 times a day
Soma, as needed (gives me 45 a month)
30mg Cymbalta x 1 per day

For the past few months, my pain levels are totally unmanageable! I am barely getting through my day. I am so tired and I take baps with the kid every day when I wish I were doing other more productive things with that time. I keep telling my doctor this but he comments about my doses already being high & I know they aren' t. My neighbor takes over 3x the meds I do. And if the doses people are taking according to other pain forums I've read are truthful/accurate (I assume so), then I am actually at the low end.

I want to be off meds hopefully someday. I am trying RF ablation next month & also going to call some surgery center I' ve seen on TV recently that boasts low recovery time & just a one inch incision. Very attractive to me considering the 2 year old, and the fact that I've got ZERO family & a boyfriend who is incapable of logging off his pc long enough to take care of his child properly or other adult duties. I get about 1/2 a day of recovery time after a surgery, if that. So I' m curious, anyone ever heard of child care being paid for via insurance or anything for someone who doesn' t have other options? & how can I convince my doc to up my meds until and for the bit after RF? I need to live my damn life, pain is ruling me, then the guilt of the messy house, everything compounds together and I wish I could run away for awhile, get some time to myself. I' m starting to feel crazy, seriously. i do everything even when i can barely walk.
My bf has pretty much checked out. he comes home an hour before our sons bedtime & on weekends his eyes are glued to the pc screen. if money wasnt a huge issue, i would already have moved out. i feel more like a single parent WITH him than I would without. he knows im in pain and doesnt offer any help, he said one day that he cant handle the kid, too stressful. wow, didnt know a parent could chose to care or not care for thier kid as if they were simply a sitter.

anyone? anything? what do i do?
Reply
 
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annette030 responded:
Please discuss your problems with your doctors, do not bother with TV ads about surgery. They do not know anything about you or your medical history. I also have FMS and it very much complicates any medical history of chronic pain. Surgery could help, or could actually make your pain worse.

Your BF (and you) should have thought about the stresses of a toddler before you had a baby together. I have not heard of any kind of help with normal toddlers while their mom has surgery. Check with your county (phone 211) about respite care if your child is not entirely healthy.

From my point of view, your pain med doses ARE fairly high, certainly are not considered low. But it is an individual thing. We are all different. I take methadone 10 mg. three times a day, and oxycodone 20 mg. as needed for breakthrough pain, (usually twice a day). That is all the opioid-type medicine I take, and I have been taking opioids of some sort daily since 1995 or so.

Is your Opana a long acting drug that you take on a schedule, or do you only take it as needed for break-though pain?

Trust me, I have been in your shoes with a husband and a toddler, I discovered when we split up that I was taking care of two kids, not one. Money was a little tighter, but life was a lot better after he moved out. It was fairly easy except for the childcare. But I have since found out that it is tough for ANY mom to find decent childcare.

Take care, Annette
 
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calleryblossom replied to annette030's response:
Thank you for 9/10ths of your reply. The other 10th was judgemental & completely unnecessary, wow.


No need for anyone else to reply. If I could have figured out how to delete my post I would have. I' m going to go find another forum that's more active. I want to reply to topics that are hours or days old, not years.

Take care, I wish all my fellow spoonies a few extra spoons here & there. Bonus spoons, if you will.
We do the best we can & that' s all we can do. Never let anyone, including yourself, judge you or make you feel guilty about your limitations. You are special, beautiful, & worth it. You deserve support, love, respect, humility, empathy, & every joy in life that people who live pain free lives do. Never forget it.
 
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Onehurtguy replied to calleryblossom's response:
That's funny, I made a post and Annette instantly judged me too.

Why are you guys taking Methadone, do you have addiction problems prior, or was that judgmental in saying? My knowledge of methadone is it was/is used for opiate maintenance for recovering heroin addicts, no?

Or was that judgmental again.... You see Annette, it so easy to judge when someone is asking for assistance. Maybe you shouldn't label everyone on their first posts on these forums, you may have more active members if you didn't label them and chase them away.

Your support mechanism is lacking!
 
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ctbeth responded:
Hi from snowy Connecticut,

May I ask what is the diagnosis for your back, hip, and leg pain?

Do you know what is the name of the surgery that you're considering?

I have not heard of insurance paying for child care, but some do pay for a home health aid to come to your house post-op and help with housework, etc.

Perhaps if your BF could accompany you to the MD and the MD can explain that you have limits and need help.

Re: increasing meds temporarily after RF, have you discussed this with your MD? Seeing how your discomfort can increase few a few days post-RF, this seems like a reasonable request.

I don't think anyone here is judgemental, but that's just my opinion. Annette is a very supportive RN who has helped me many times.

When written word is the medium, rather-than speech, we lose the non-verbal communications, tone of voice, et al. It is easy to be mis-understood.

On that note: you did state that the 2-yr old is also your BF's child. He really should be helping care for his child, especially since you're not well right now.

Please try to talk to him, take him to the MD with you and ask the MD to talk to him about your condition.

Is there a fibro support group that you can attend? If there is, would your BF come with you to hear just what this is all about?

Have you a friend who could help out with the child?
If you cannot get a home health aid paid for via insurance, can you pay someone to be there when you're post op?

Please don't leave our group too soon. There are many people who have gone through, or are going through, the same sort of situations that you are.

I am a single Mum with four children. They are mostly grown up now, but they were all in school when I got injured.

Annette was a single Mum for a while, too.
We understand.
 
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mel0222 responded:
Hey calleryblossom, I can so hear myself in your voice! When I first posted on this site, I was truly helped by so many others who have been through the pain as well. I too felt as if I was in a hell hole with no way out. Oh yea, single mom too but got rid of my "other child" about 5 years ago. However, I am blessed with an amazing family.

When reading about your edema, alarm bells went off in my head. I was taking a similar Rx "cocktail" ( I call it that) for back pain, knee pain, and fibro. I ended up having congestive heart failure and a heart attack. You describe the pressure so accurately. When in the hospital with my CHF, I lost about 30 pounds of water weight; I had fingers instead of "hot dogs" again! Did your MD prescribe you Lasix and potassium to help with your water retention? Does your doc listen to your chest for pneumonia or congestion? I was a heavy smoker as well so I was really asking for trouble.

Approximately 2 years ago I had my second knee replacement procedure. At that time, I was already on so much pain meds because my tolerance level had reached its peak. They assigned me a pain specialist and put me in Intensive Care to recover because of the amount they had to give me in post-op. I caution you against increasing but your anesthesiologist should know how to manage your pain while in your procedure as well as afterwards.

I also understand and can empathize with your frustration over not being able to keep the house up or feel "productive". It must be especially tough with a toddler and BF who doesn't help out. I think CTBeth had a good suggestion of bringing him with. My adult daughters thought I was a "drug addict" and needed to just quit taking my pain meds. I brought them with to my neurosurgeon appointment so he could explain the severity of my back condition. It is very difficult for people who do not have to tolerate and function with awful chronic pain to understand our own annoyance of being dependent on Rx.

Just a thought...if you don't take care of you; you can't take care of your little one. I wish I lived close so I could offer help with the little one as this is what my job was before my pain level and Rx got to be too much. Contacting social services in your county as Annette030 suggested may be helpful. I have called them before and they were very helpful since I am on SSD/SSI and Medi-cal.

Again, I am so very sorry for your predicament. I hope and pray for solutions to become evident and you get some help and relief.

I


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