Homeostasis/Tolerance ruins every treatment attempt

[MamaGeek]

Does anyone else have problems with homeostasis and drug tolerance, to the point that whatever treatment you try only works for a couple months at best? I've taken and gabapentin, lyrica, baclofen. They all worked great...until they stopped working. Sleep aids are the same. Even diet! I gave up sugar, grains, and dairy. I felt fantastic for a few months on that diet, then wham! Symptoms all came back again. It is so frustrating. I feel like I'm on a roller coaster. I want desperately to find the treatment that is right for me, but even cycling between drugs doesn't work. My tolerance takes too long to wear off. I have to go through a period of untreated suffering before I can re-try a drug.

Does anyone else have this problem? Have you found a workable solution?

 

[Sagey]

MamaGeek,

Sorry u feel frustrated.Fibromyalgia is such a hard disease to get under control.It is like a roller coaster at times!

Many of us try to find the right balance and just when we do, something happens or changes that can make it worse.

Stress affects Fibro a lot and we can have stress everyday.That can affect us negatively. Some medications work for awhile and then just stop working.A lot of the depressants are that way. But it takes time to find the right treatment that works for u!

Medications work differently on each person.One person will say "this med works great" it helps my energy,and another will not find it to work at all.
So it can be hit or miss to find the right ones.

I found that a treatment might be good for a year and then it needs to be tweeked a little, Your activity might change or your pain has increased.
It's just not a simple easy solution with Fibro.
And Im not saying u can't but it does take perseverance and a lot of drs appointments ! Lol

Fibromyalgia does wax and wane. You could be feeling great for a couple of days and then bam!! you go downhill and your in bed for days.And have to rest.
I think the best advice with Fibro is
Listen to your body
If you don't you'll be hurting.
So pace yourself carefully,be active And find the combination of meds and treatments that work.

Keep working at it and you'll find the right treatment

You can live happy with Fibro but u have to be your own healthcare advocate

Good luck and feel better

Sagey

 

[Marvis]

Sorry you're so frustrated. That sounds really awful. I'm just wondering - is it possible that when the meds are working and you're feeling better you try to go back to your old level of activity and then overdo and have a flare up of symptoms? I'm wondering if you keep pacing when the meds are working if the effect will last longer. I was feeling much better on effexor, than at Christmas starting running around like a crazy person and crashed and now am back to where I started.

 

[Forgetmenot]

I'm afaird that something a lot of us find.most drugs are not made to be on long term.and a lot of us find our body's get used to a dose to fast.did u try upping up the dose with your dr.or did u just stop them.?
This illness is always one step behind us.it scares the crap out of me,I miss a dose or im Late and bang,I can hardly move.

 

[DoobieBrother]

Hi Mamageek. Sorryto hear you are suffering. Sadly, over time every pain controller (don't like to call 'em pain killers, as they do not!) I have tried, required an increase in dosage to maintain a given level of relief. The only choices at that point are to take more and more, or switch meds. The former option is clearly nasty, leading to possible liver, kidney and/or heart problems, which leaves the latter: switching to something else.

So far the only medication that works for my pain without the need to increase the dosage is cannabis. I know, I know...I tend to be cannabis-centred, but after going through hell for nearly a decade and trying it all, it's what I rely on.

 

[Marvis]

Hey Doobybrother - Which strain do you use? Do you grow it or have you been able to purchase an effective type? @ Mamageek - I hope my comment didn't sound like patient blaming. Wasn't intended that way. I've been struggling for years, but just diagnosed a year and a half ago, so still really trying to figure out how this all works. When I flare up (which is pretty much all the time now, there was a brief, shining moment before Christmas where I had a little relief) I always wonder 'what did I do? Do I do too much? Not sleep enough? Not rest enough? Eat the wrong things?' It's exhausting. Now to hear that if I find a med that helps me it could crap out on me...sigh.

 

[MamaGeek]

Thanks, everyone, for the suggestions and support.

To address some of your questions:

I know when my meds stop working because I can't sleep well. That is always the first sign. Other symptoms follow. And I don't engage in overactivity, just normal level.

I do not up the dosage, because I don't want withdrawal or side effects. I go off meds, then use a different one.

Right now my fibro is mainly controlled by diet, and I only take meds for about a week per month when I menstruate, because that always triggers migraines, which render me completely non-functional.

Canabis is not an option for me, as a federal employee subject to random drug testing. Even if it were legal where I live, I could not use it or I'd lose my job.

Diet seems to be my best option right now.

 

[medicmurphy]

@MamaGeek,

I'm feeling your frustration. Like you, any new med I have tried works for an average of a month or two. The SSRI drug family has pretty much been exhausted. The side affects are too uncomfortable to deal with. Not worth the effort. I did the Gabapentin route....didn't work. Also tried NSRI's...again with no affect. Tramadol really upset my stomach, literally made me puke over and over. Amitrptaline had to be compounded for me because I've developed a low tolerance for medications, but like the other meds, it too didn't do much. I was so hopeful at first. I follow a non inflammatory diet and must say it doesn't do much. The only med I take is for pain, and even then sparingly because I worry about addiction side affects. Hence, I use heating pads for symptomatic relief.

I've lived with this condition for 26 years. I work in the medical field and kept the Fibro DX silent as so many professionals concluded all Fibro patients were "psychs". It's in our heads!! It's only the last few years that Fibro has earned a legitimate reputation. For myself, I've noticed a great decline in my symptoms these past two years, which has led to frustration because I can not tolerate medications. Our world can certainly become smaller when every day we're symptomatic. For myself I do not get any relief. Early on in my DX I did. Not now.

 

[moe1959]

Fibro for me at times shows physical symptoms, such as swelling, severe in my knees, muscle twitching. Laitly my knees have swollen up to the size of a softball, its visable. Ive taken photos to show my dr next visit.
I agree whole heartadly stress makes life worse.

 

[DoobieBrother]

Hey Doobybrother - Which strain do you use? Do you grow it or have you been able to purchase an effective type? @ Mamageek - I hope my comment didn't sound like patient blaming. Wasn't intended that way. I've been struggling for years, but just diagnosed a year and a half ago, so still really trying to figure out how this all works. When I flare up (which is pretty much all the time now, there was a brief, shining moment before Christmas where I had a little relief) I always wonder 'what did I do? Do I do too much? Not sleep enough? Not rest enough? Eat the wrong things?' It's exhausting. Now to hear that if I find a med that helps me it could crap out on me...sigh.

Hey Marvis, apologies for the tardy response.

I've been growing for about thirty years, as I'm far too cheap to buy it! Actually I really enjoy the gardening aspect of cannabis, and am working on becomming a Licensed Producer asap. This will allow me to legally sell any excess to a local dispensary here, providing organic, safe and tested meds to other maritimers.

Oh, strains: Otto#1, Cannatonic, Herijuana and a specific strain of Blueberry are my current favs. What I've found is a 1:1 CBD:THC works quite well, but want to explore varieties with less and less THC to compare their effectiveness in controlling neuropathic pain. The bad news is 95% of the stuff out there is useless (at least in my experience), but the good news is those that do work, work well. I've mentioned in other posts how my morphine intake is now practically zip on a day-to-day basis - not counting flares. Much rather ingest a little coconut oil infused cannabis than liver/kidney damaging heavy opiates.

Hope this helps
DB