Unsure and need advice

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leejak

New member
Joined
Nov 16, 2022
Messages
9
Reason
DX FIBRO
Diagnosis
11/2022
Country
UK
I have had pain in hips, lower back, shoulders and shoulder blades. Sometimes feet and knees. I get headaches. I have been suffering with stomach pains and now taking omprezole but I am having episodes of cramps so thinking IBS. GP has completed scan for gallstones...clear. X-ray for hips....clear. Bloods tests showed low vitamin d...had a 5 week dose of vitamin d. I went back to GP and asked if it was fibromyalgia or perimenopause as my symptoms were over lapping the 2. Including itchy ears. A building inner rage. And zapping type pains mainly in legs.
She has prescribed duloxetine 20mg tablet once a day and a follow up appointment in 2 months.
I am concerned regarding this medication. Whilst my hip and back pain are daily. And very often is interrupting sleep. It's is bear able to a certain extent. Is it exhausting being in pain most of the day.
I suppose my question is...how bad should the pain get before taking these duloxetine? She said try them and if I dont like the side effects... mostly nausea then to stop them. Is it ok to stop them if I take them for a week? Will I get withdrawal? How long before I know if they are helping? Will I ever be able to not take them if I start?

Apologies but I have noone to ask regarding this
 
no apologies necessary @leejak - everyone needs someone they can ask.

My suggestion is to educate yourself about the medication before you make any decisions - a website i use a lot is drugs dot com (we are not allowed to post outside links, for a reason, so that is the best i can offer) - they give comprehensive information about what the drug is, what it does and what it is typically used for. They also go over side effects listed by how common they are. You can also just type the drug name into your favorite search engine and get loads of information from a lot of different sites.. make sure you use ones that are well regarded, like Mayo clinic, Healthline, Harvard Medical, etc.. I tend to stay away from WebMD, however... just my personal preference...

I tried duloxetine for my neuropathic and fibro pain - really did not do much for me, but everyone is different.
It can take a while to know if it is going to work for you, tho.. generally 6-8 weeks.. one week is really not going to tell you much, unless of course, you have a bad reaction to it.
At only a 20mg dose, however, I doubt you would have any major withdrawals, but it is always best to talk to/verify with your doc and/or pharmacist about that. Again, everyone is different, so how you react to it will be unique to you.

As for "how bad" - that is hard to quantify - everyone has different pain thresholds, what might be a 4 to me could be a 7 or 8 to someone else, or vice versa...
I guess my question for you is, why would you want to live in pain when there is a chance that this could help you?
I get being worried about coming off of some drugs, and of course side effects, but my personal experience has been not that bad.. only one has caused me any real grief coming off and that was sertraline (used for anxiety) and I have tried a bunch of them over the last few years.
I am currently trying one last option for the fibro/nerve pain (to me, anyway) and if this one does not help, well, i guess i give up on "modern" medicine and try to manage with alternative options. (in many ways, I already am - with dietary changes and whatnot)
 
I suppose my question is...how bad should the pain get before taking these duloxetine? She said try them and if I dont like the side effects... mostly nausea then to stop them. Is it ok to stop them if I take them for a week? Will I get withdrawal? How long before I know if they are helping? Will I ever be able to not take them if I start?
Hi leejak, and welcome! 👋
Complementing cookiebaker's good advice I prefer looking only for alternatives, I'd ask the opposite question: if you can just about manage without why not try other things like pain management & relaxation for coping, exercises, stretches etc. for local pains, pacing for the ache and supps for all the symptom areas? Main argument for me would be if pacing isn't possible much, e.g. financial pressure, or I desperately need a life belt until I've found alternatives, and then try weaning off again.
But I did start with duloxetine/Cymbalta's cousin amitriptyline. Hardly helped, not at all for pain, a little for sleep, 8 side effects building up inside of 4 months, regardless of the dose. But whilst testing it I also built up a whole toolbox of other things for sleep, so it was great letting go of that supposed life belt, and getting my brain back.
I think for duloxetine like amitriptyline and many other things starting low and going slow is a good idea. Like cookiebaker says just taking them for a week is a waste of time, it will take longer than that to get over side effects and see if the main effects are worth it. If you have a bad side effect you can still dose down. I got a splitting headache from a low dose of amitriptyline, 10mg, but then took 2mg drops and experimented with them, these aren't available anywhere else or for duloxetine perhaps, so then you'd have to stop. The longer you're on them, the longer the withdrawal may take. But I managed to wean off amitriptyline under two weeks, but I'd only recommend that to people who know their bodies well, otherwise longer. (BTW It was the only fibro med I managed to take longer than a few days, aside from diclo which didn't touch anything at all.)
 
I have had pain in hips, lower back, shoulders and shoulder blades. Sometimes feet and knees. I get headaches. I have been suffering with stomach pains and now taking omprezole but I am having episodes of cramps so thinking IBS. GP has completed scan for gallstones...clear. X-ray for hips....clear. Bloods tests showed low vitamin d...had a 5 week dose of vitamin d. I went back to GP and asked if it was fibromyalgia or perimenopause as my symptoms were over lapping the 2. Including itchy ears. A building inner rage. And zapping type pains mainly in legs.
She has prescribed duloxetine 20mg tablet once a day and a follow up appointment in 2 months.
I am concerned regarding this medication. Whilst my hip and back pain are daily. And very often is interrupting sleep. It's is bear able to a certain extent. Is it exhausting being in pain most of the day.
I suppose my question is...how bad should the pain get before taking these duloxetine? She said try them and if I dont like the side effects... mostly nausea then to stop them. Is it ok to stop them if I take them for a week? Will I get withdrawal? How long before I know if they are helping? Will I ever be able to not take them if I start?

Apologies but I have noone to ask regarding this
suppose my question is...how bad should the pain get before taking these duloxetine? She said try them and if I dont like the side effects... mostly nausea then to stop them. Is it ok to stop them if I take them for a week? Will I get withdrawal? How long before I know if they are helping? Will I ever be able to not take th
suppose my question is...how bad should the pain get before taking these duloxetine? She said try them and if I dont like the side effects... mostly nausea then to stop them. Is it ok to stop them if I take them for a week? Will I get withdrawal? How long before I know if they are helping? Will I ever be able to not take them if I start?
Duloxetine is meant to be taken daily, not as needed. You may experience some side effects. When I took it, the only side effect I had was disturbing dreams. It is not okay to stop them without consulting with your doctor first who will give you instructions on how to wean yourself off. Duloxetine and other medications like it typically take several weeks before any effects are seen. I would suggest giving it a month to see if it helps and, yes, you will be able to stop taking them if they don't help, but only as I said earlier by titrating down to avoid withdrawal side effects.
 
suppose my question is...how bad should the pain get before taking these duloxetine?
No one can really answer that, because one person's 8 out of ten is another person's 4.

I would recommend not taking the duloxetine at all, and giving other non-drug things a good try first. If you don't, you won't know what helps that doesn't have side effects.

Now, if the pain is so bad you cannot walk or can't sleep, then try medication. Have you tried any OTC medication? Usually it doesn't do the job for fibro people but worth a try.
Also, you might try a non-addictive+ OTC pain medication. What works for me for certain kinds of pain, for instance, is Advil and baclofen (which is a muscle relaxer).

But no medication including OTC is good for you long term.
 
I suppose my question is...how bad should the pain get before taking these duloxetine?
No one can really answer that, because one person's 8 out of ten is another person's 4.

I would recommend not taking the duloxetine at all, and giving other non-drug things a good try first. If you don't, you won't know what helps that doesn't have side effects.

Now, if the pain is so bad you cannot walk or can't sleep, then try medication. Have you tried any OTC medication? Usually it doesn't do the job for fibro people but worth a try.
Also, you might try a non-addictive+ OTC pain medication. What works for me for certain kinds of pain, for instance, is Advil and baclofen (which is a muscle relaxer).

But no medication including OTC is good for you long term.
 
Thanks all for replying. After reading through posts on this forum and am slightly concerned that my GP has diagnosed this after one phonecall appointment and one examination. It seems others struggle to get a diagnosis and suffer for years before getting an answer. She seems quick to write off perimenopause as I am a couple of years off being 45.
I am going to keep reading the posts to see if anyone has experienced the same as myself.
 
It never hurts to ask questions, even of your GP - they are, after all, just human like the rest of us, and no one is perfect.

While getting a diagnosis these days does go a bit quicker, now that fibro is more commonly accepted as a real illness, one still needs to rule out other potential problems that can be far more detrimental - mostly because there is no single test that says yes or no to fibro.. it is still pretty much a diagnosis of elimination - eliminating other things that share a lot of the same symptoms. Not to mention, fibro can co-exist with many other things.. so.. yeah, it can take a bit of work to get a diagnosis.
All of that said, the diagnosis of fibro really does not mean all that much, either.. yes, it is something to put down of forms if you need to do that, but beyond that... 🤷‍♀️ for me, giving it an actual name was a kind of a mental relief.... I didn't have to worry so much that there was something more serious going on, if that makes sense?
 
Thanks all for replying. After reading through posts on this forum and am slightly concerned that my GP has diagnosed this after one phonecall appointment and one examination. It seems others struggle to get a diagnosis and suffer for years before getting an answer. She seems quick to write off perimenopause as I am a couple of years off being 45.
I am going to keep reading the posts to see if anyone has experienced the same as myself.
One phone call and one physical examination absolutely cannot determine fibromyalgia. Your doctor leap to a conclusion far to quickly.

I think this is cause for more that slight concern. I would not accept this doctor's quick opinion.

There are many other things that could be causing the symptoms you have. It is imperative that you get tested for these other things because if you simply accept a too-fast diagnosis of fibromyalgia, you could be unaware of some other condition that needs treatment.

Please seek a second opinion from a second doctor. I recommend that you do not mention fibromyalgia to this second doctor, but list your symptoms and ask to be tested for the things that might cause this. There are conclusive tests for many of those things, and it is wise to find out if you have one of them or, on the other hand, eliminate them.
 
One phone call and one physical examination absolutely cannot determine fibromyalgia. Your doctor leap to a conclusion far to quickly.

I think this is cause for more that slight concern. I would not accept this doctor's quick opinion.

There are many other things that could be causing the symptoms you have. It is imperative that you get tested for these other things because if you simply accept a too-fast diagnosis of fibromyalgia, you could be unaware of some other condition that needs treatment.

Please seek a second opinion from a second doctor. I recommend that you do not mention fibromyalgia to this second doctor, but list your symptoms and ask to be tested for the things that might cause this. There are conclusive tests for many of those things, and it is wise to find out if you have one of them or, on the other hand, eliminate them.
Thanks for the reply. I have had blood tests. An ultrasound to check for gallstones and and x-ray for hip pain. I explained to the doctor I thought it could be perimenopause. She did not even consider this. So I mentioned FM. Apart from pressing down the top half of my spine and asking if I got pain under my shoulder blades (which I do) she pulled up FM on the computer and went through the symptoms. Of which most I ticked. The issue is the other doctor at the practice is her sister!
 
Apart from pressing down the top half of my spine and asking if I got pain under my shoulder blades (which I do) she pulled up FM on the computer and went through the symptoms. Of which most I ticked.
She is relying on outdated information (the tender points), so yeah, would not necessarily accept that dx - and has already been mentioned, fibro can co-exist with many other problems, so you NEED proper testing to rule out those other problems.

you say you have had blood tests, but what kind of blood tests? what were they looking for, specifically?
Are these tests being explained to you? There are many different types of blood tests that can be done, so knowing what was tested for and the results of those tests is kind of important. And yes, you DO have a right to know these things. Dont just accept the common "tests came back fine" answer - you want specifics.

The issue is the other doctor at the practice is her sister!
Not sure where you are located in the world, but perhaps it might be best if you looked for a doc outside of this particular practice, if possible?
If you can, and do look elsewhere - list your symptoms (the major ones) and ask them what is wrong, do not ask about anything in particular - ie: dont mention perimenopause or fibro, or anything else.. They should be telling you, not you telling them.
 
I second everything @cookiebaker says above.
"blood tests" doesn't tell you anything. If it is just a CBC, which is what is normally done, it won't test for these other disorders (those that can be tested with a blood test, that is).

Verbally saying yes to the symptoms tells you nothing, really, because you could say yes to the same ones if you had some other disorder entirely. That is why it is so important to get tested for Lupus, MS, arthritis, ALS, thyroid disease. lyme disease, and all the others. Not all of these can be determined by a blood test.

Most people will feel pain if someone does what your doctor did, whether or not they have fibro, so that is a lame test. Probably the doc thought it was "pressure point" test, which we all know was debunked years ago.

Clearly, you need to go to a different doctor in a different practice.
 
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