Help me know what’s going on.

[Giztap]

One year ago, having recovered from heart by pass surgery, I started have symptoms of extreme exhaustion, severe lower back pain. Severe knee pain, hard to get up from seated pos, hard to sit down, all other joint pain, wrists, elbows, shoulders, hips and ankles. I went down hill very fast. I have been on hydrocodone for several years, for lower back pain. Tryed Cymbalta, worked on the pain but side effects were impossible. Am now trying lyrica but only on 25 mg twice and not getting much relief. Hydrocodone helps but on;y for about 45 min. I used to be very busy but now I can’t hardly walk or stand up.

 

[sunkacola]

Hi Giztap, It's not really possible for us to help you to know what is going on. We are not doctors, nor are we there where you are. What we can do, however, is welcome you to the forum and offer whatever tips and advice we have if it turns out you have fibromyalgia.

The first thing you need to do is get the full range of tests done to eliminate all of the many things that could be causing your symptoms. FM is only diagnosed by eliminating all the other things, so the tests are important.

We are here to help and to support you in whatever way we can. The one piece of advice I would offer at this point is that taking hydrocodone regularly is unwise, and it would be good for you to explore other alternatives for easing the pain. especially as it is not really that helpful. That drug is highly addictive and will cause you more problems than you already have in the long run. Try to taper yourself off it, and if possible get a doctor to help you to do so. Best of luck to you!

 

[Giztap]

Thank you for your response. At this point I will accept and follow any advise I receive. My VA doctor is considered High Risk for Covid and is un able to see me in person. Like you said, there is no test fo FM, it is only eliminating all else. I have reduced my hydrocodone use to only when the pain is unbearable. Cymbalta reduced the pain to give me increased range of motion however the side effects were prohibitive. Lyrica has not improved the pain and is now causing indigestion and reflux so I guess I will have to stop taking it also. I have not tried marijuana but something is going to have to break, I just can’t live like this much longer. What specialist would be the physician to get to the heart of the problem? My VA primary care physician doesn’t believe me, doesn’t know or doesn’t care to help me. But thanks for your input.

 

[sunkacola]

You may have to see several specialists in order to rule out everything. Just keep at it until there's a conclusion.

For advice on managing this, see my post:

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

One thing I want to say is this: I know FULLY how you feel when you say "I can't live with this". But....and you may not like to hear this.....I strongly advise you to send those thoughts out of your mind when they come in. Reason: you may have no choice but to live with this. This may not be something that you can cure. Unless you want to kill yourself, there may be no option but to live with it. So to tell yourself you can't is definitely not going to help.

Having said that, I also know that there are many, many things you can do to help yourself and possibly make it better, and some of those are in that post of mine. I suggest trying as many as you can. I do advocate for the use of medical cannabis, and I think it is best to combine that with a good CBD product. This combination often helps me with the pain, although nothing removes it entirely for me. Just avoid opioids and other heavy-duty meds if at all possible.

Don't continue to see a doctor who doesn't believe you. Even if you have to cough up the money to pay for it, see someone who understands this syndrome. Seeing a doctor who dismisses you will only cause frustration which will cause stress, which will make things worse. I have personally had to pay for a lot of my medical care because I didn't have insurance, and believe me I do not have a lot of money!! But it's worth it if you need the help.

 

[dolphindora]

I know it’s a complete nightmare. I was out on Pregablin 12years ago for anxiety. One doctor put me on a higher dose last year to help pain but it made me feel absolutely rotten so lowered dose again. My regular doctor commented that I’ve been on it for too long so I’m now on 100mg morning and 100mg evening. I’ve been on Tramadol for nearly a year& half and doctor said it’s not for long term use it helps the pain slightly but not enough unless I take higher dose which I don’t want to do but I’m still waiting for Pain Clinic to look at my medication. I’m also on Paroxetine for anxiety so it’s hard cause I don’t think there are many medications for Fibro that won’t react with what I’m already taking.
Difficulty is whilst you’re waiting you’re in pain every minute of every hour so just one day of waiting is hard but it rolls on and before you know it months have passed and you’re still waiting.
I just wish someone would help me get the right medication to give me relief of pain etc but not Tramadol.
I’m on 50mg 3times a day and I could easily increase it but then I know I can’t function properly as when I first started it I was on 400mg per day and it helped but I was like a complete zombie and hated it.
It’s seems such a plight to have medication sorted.
I do wonder what’s in store for me pain wise.feels like an utterly miserable existence& one that’s never going to be cured. Still at least we are still here&things could be so much worse just doesn’t feel like that at times.
I wish you well and hope you get sorted.

 

[sunkacola]

I do wonder what’s in store for me pain wise.feels like an utterly miserable existence& one that’s never going to be cured. Still at least we are still here&things could be so much worse just doesn’t feel like that at times.

dolphindora, I completely understand your feelings and have had them as well. But those thoughts have never been helpful to me.

Don't get me wrong...I am not Pollyanna. I know everything can't be solved by just being positive. And no one, especially those of us with chronic pain, can be positive about it all the time. Not possible! I notice that you are aware that things could be worse, and that's one thing I remind myself of as well.
Whenever I start thinking, "I am miserable", "this is a miserable life" which it sometimes does feel like, I tell myself to stop saying that in my mind. I don't start trying to think "I am fine", that would be ridiculous and a lie and I never lie to myself. (or others). But I do something to distract myself. Read a good book, go for a walk in nature, play with my dogs. Anything that is healthy and distracting. Just to take my mind off it. I do that a lot.