Medullary Sponge Kidney Disease (MSK) Community
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Avatar universal

Long term prescription narcotic use

Hi, I'm Bridget - I'm new to the forum :) I'm 34 and have MSK and fibromyalgia.

I was diagnosed with MSK in 2007 and back then had a rather invasive surgery to basically scrape my kidneys clean in the hopes it would solve the problem. Sadly the pain never receded so my urologist sent me to a pain management doctor. She put me on the fentanyl patch with low dose vicodin for break-through pain. Then the following year I was diagnosed with fibromyalgia (they think the intense long-term pain caused it) so I was also give a million different kinds of fibromyalgia and neuralgia meds to try - none of which worked out (all had major side effects). Now I use Gabapentin but it only barely makes a difference (Vitamin D works better).

Is there anyone else on here that has been on prescription narcotic pain meds for a long period of time and if so, how is that working for you? Do you know of any way to explain the validity of your condition or the need for pain meds to family? Currently my family thinks I'm a drug addict or that I'm some how a bad person for "abusing" drugs for so long. I've never taken more than one vicodin a day as needed and I even cut the dose of the fentanyl patch in half when I thought I was doing better. Unfortunately that caused some serious problems - I was so sick I eventually lost my job. Now I'm applying for disability but I'm not sure what I'll do in the meantime as my family will only help me if I work full time and get off pain meds. They think if I just got off the pain meds I'd feel so much better. I don't agree of course but sometimes I wonder if the pain meds are changing my personality or having some weird averse affect. I have an MBA, I used to work 80 hr wks - I was never lazy - and now I can't work? I can see why they just think I'm lazy or a druggie.

Any suggestions?
- Bridget
1 Responses
Avatar universal
Hi there, wow I too suffer from both fibro and MSK, along with a couple of chronic pain inducing illnesses.  Nope people don't understand ailments unless they can see it unfortunately.  I've learned that as I get older, only my opinion of me counts and nothing you can say or show doctors reports nor hospital visits will convince them otherwise.  My family gribes when I missed family holiday occaisions.  They don't get I'm really unable to socialize, be able to sit for long periods, eat etc.  When my kidneys are going wonky of course fibro too which is a circle of hell.  the pain meds barely take the edge off and just enough so I'm actually able to eat.  My heart goes out to you, I know exactly what you feel.  hugs
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