Do I fibromyalgia

Status
Not open for further replies.

Matilda71

New member
Joined
Feb 7, 2023
Messages
8
Reason
DX FIBRO
Diagnosis
03/2023
Country
UK
Hi, I'm new on here. I just wanted some opinions really. I'll describe my circumstances.
In 2020 I had two major operations which I found very traumatic. I was signed off work for these which was when covid came about. When I went back to work I was bullied buy my manager and another member of staff which made my anxiety get worse and I eventually had to leave. I experienced wide spread pain all over my body, Tremors and migraines which I had never had before. I also had brain fog and coordination problems. I have had blood tests which found a underactive thyroid problem, I'm also on HRT and have had so many antidepressants. I've seen a neurologist, I've had mri and ct scans with everything normal. I have depression, sleep problems and constant joint and muscles pain. I've now been referred to a rheumatologist. I've been put on nortriptyline and duloxetine, has anyone had any experience with these medications ? I just feel a mess, I have tried to work but only lasted 3 weeks due to being in so much pain. Does anyone have any thoughts on this, I would really appreciate some feed back. Thank you.
 
Hi Matilda,

from what you say it seems you are on a whole pharmacy of drugs. It is entirely possible that some of those medications are actually causing the problems that you are having, or at the very least making them worse.

You can find people on this forum who have had experience with all of those medications you mention. Some have had good experiences, and from what I have read here over the years it seems to me that more people have bad experiences with a lot of them than good experiences. I would first suggest that you do a very thorough review of the medications you are taking and see what y ou could possibly do without. Some drug interactions, not necessarily the ones that pharmacists and doctors know about, can also exacerbate these symptoms you are having.

Having said that, I want to refer you to the post I made about managing fibromyalgia without using medications as the main method. I am not saying medications are bad. some people need them occasionally and a few need them all the time. But it is wise to find out what you absolutely have to have, and what you can do without by dealing with your symptoms in a non-medication way. Please check this out and give some of these things a try. You may find, as I did, that you can move off the medication regime partially or completely if you take charge of your body yourself. It is very empowering to do this and stop relying entirely on doctors and drugs to help you.

As for whether or not you have fibro, no one here can tell you. You need to be tested for all of the various things that have symptoms similar or identical to fibro to rule those out.

Let me know if any questions, and best of luck. Let us know how it goes.
 
  • Like
Reactions: MNP
Hi Matilda!
I am so glad you posted in this forum! I have found so much compassion and help here and I hope you will too!

First I wanted to say that I am sorry for the pain you are in…emotional and physical.
I understand (in my own way) how it feels to face both of those challenges.

Second I want to say there are people on this forum who have found ways to manage their various pain and other issues and this provides great hope and encouragement for me and hopefully for you too!

I want to emphasize Sunkacola post on “Managing Fibromyalgia Symptoms….”.
The first time I read that it helped me realize that if I did five things that all helped just 10 percent ….I could feel 50 percent better!!!🙂

I also want to tell you that I have taken Duloxetine for 10 years(even though I really do not like taking medication for anything) for anxiety and fibro.

What I can tell u for sure is that I have no side effects from it that I am aware of. Does it help with my symptoms? I am really not sure. I have taken it for so long now that I feel I would need to taper off it to see if my symptoms change and right now I really do not want to risk symptoms potentially worsening.

Overall, I just want you to feel compassion and support here and know there are many of us that will be here for you as you navigate this journey!🙂💕
 
Thank you Sunkacola and MNP for your replies :)
 
from what you describe and the fact that you have a throid problem it sounds like you have Hastimoto's desease . Both can have similar symptoms as Fibromalgia - you need to ask your doctor for a throid panel blood test - that will show youir tsh and especially T3 and T4 etc if they are low then you simply take a tablet for the rest of your life and treat each of the Hastimoto' symdons

Once you start on the tablet a lot of symptons will clear up but you will still have Hastimoto's if you have Hastimoto's then there is a self help forum over at (deleted by moderator because outside link)

mind you like Fibromyalia Hastimoto's is not fully understood by a lot of doctors - so you might need to go searching for a Doctor that fully understands it - a good book to learn about Hastimoto's is "what you must know about Hastimoto's disease" by Brittany Hendenson MD and Allison Futterman. it does not tell you how to cure it it just explains what is happening and why you have the symdons
 
Last edited by a moderator:
the deleted web site above is smartpatients - I have been in the IT industry since the 70's and in all that time a link was text that You can click on and jump to another document. what I entered was not a link - so enter smartpatients in your browser and the site will come up exacty as if you copied the text I gave you before into your browser it would have done the same - at no time did I use thje link icon.
 
What I deleted was actually a link, I believe, because it was in blue and I could click on it.
And, I fully believe you, johnsalmon, that you did not intend to post an outside link. I think sometimes this can happen by accident.
No worries....no offense intended.
 
Johnsalmon I have hypothyroidism and have been on medication for it since August last year, I'm having regular blood tests to monitor my thyroid levels. I also thought my symptoms were because of that but 6 months later I still have the symptoms. I also thought it was the menopause as I had my ovaries removed but again 6 months on HRT and I still have symptoms. I feel like alot of things have been ruled out. So now trying to find out what is wrong. I'm waiting for a appointment to see rheumatology.
 
I have hypothyroidism and have been on medication for it since August last year, I'm having regular blood tests to monitor my thyroid levels. I also thought my symptoms were because of that but 6 months later I still have the symptoms. I also thought it was the menopause as I had my ovaries removed but again 6 months on HRT and I still have symptoms. I feel like alot of things have been ruled out. So now trying to find out what is wrong. I'm waiting for a appointment to see rheumatology.
if you still have symptoms then you are not being treated "effectively"
just having a TSH in the "normal" range is not good enough. there is a HUGE difference between "normal range" and "optimal" - you want to be optimal.
I too am fairly early in my thyroid treatment and still working toward optimal (finally diagnosed last Sept, despite years of suspecting it and trying to get docs to listen to me - had all the classic symptoms (except goiter) for a very long time prior to diagnosis - but they refused to listen because my TSH was still within the "normal" range - albeit at the upper end of that range.

Most docs are not up on current research in regards to hypothyroidism, and still rely on a test that has been proven over and over to NOT be an accurate indicator of thyroid health by itself. You need a complete thyroid panel to get a better overview of what is going on, including thyroid antibody tests.. If your primary care provider is not willing to work with you on this, then I would suggest trying to find a different provider - one that is more aware of the current research, and is willing to work with you to correct your symptoms, not rely on just a single test.

There are multiple resources available - from actual medical studies to "patient to patient" discussions about what does and doesnt work.
One that I found years ago is "Stop the Thyroid Madness" - both a website and book title, written by a patient for other patients... the author has also collaborated on a 2nd a book written by and for doctors on current research, why the TSH alone is not enough, and so on.
Another is the "Thyroid Change" website that also discusses current research and thinking.

and for the record, while Hashimoto's is the most common form of hypothyroidism, not all hypothyroid is Hashi's. It is important to find out the reason for the hypo condition to effectively treat the problem.

I've been put on nortriptyline and duloxetine, has anyone had any experience with these medications ?
yes, i have had both in the past, but not at the same time...
the duloxetine made me extremely tired - as in total exhaustion, fall asleep pretty much anywhere, at any time, tired... and i looked the part, as well - even my partner commented on it, and he usually does not notice such things.
nortriptyline gave me tremors... so bad it was getting difficult to eat.
needless to say, I no longer take either one.
I went thru several different meds over the last several years, and to be honest, none of the more common ones really helped much.
I do currently take L. D. naltrexone, and it has helped some with the neuropathy in my legs - has not stopped it completely, but it is much less bothersome than it used to be.

My suggestion to you, Matilda71, is to talk to your doctor about discontinuing these two meds, as they may be causing you more harm than good. Do not just stop taking them - as you could set off some nasty withdrawal symptoms - talk to your doc first!
And do not be afraid to insist you want off them (if you do). Doctors are supposed to help, not harm, but they are human, just like the rest of us... make sure you tell him/her ALL your symptoms when discussing these meds, and your concerns about them.
The choice to try a different medication, or not, should be entirely up to you. You decide what you think is best for you.

speaking strictly for myself - if I was just starting out on this journey again, I would not go down the medication route first. I would try other things first - like dietary changes, and alternative treatments to see if those things help at all (most are listed in that linked post above).. I would only turn to medications for fibro as a last resort.

It is also a very good idea to get the hypothyroid symptoms in check before trying to deal with other meds for pain.. hypothyroidism shares a lot of the same symptoms, as do nutritional deficiencies... something else to consider... Vit D, B12, Iron, and others - deficiencies in any of these can also cause similar symptoms - including anxiety and depression...

As you can see, this might be a multifaceted problem that requires a multifaceted approach to resolving. Having a good primary care provider that is willing to work with you to discover all the facets and then try to correct them - rather than just throwing pain medications at you - is a key component to feeling better. without that, we are all in the deep end of the pool, flailing about and getting no where.

I say all of this as a person that is doing their best to cope with all of the above... hypothyroid, nutritional deficiencies, fibro, arthritis related problems - and am currently transitioning my primary care to a new provider (two actually... one for the arthritis & related musculoskeletal problems, and one for general health) It is not an easy road, but I am hopeful that I am finally getting things on a better track now than where I have been.
 
I also thought my symptoms were because of that but 6 months later I still have the symptoms.
I been taking the tablet for over 2 years and my TSH etc are ideal but I still have symptoms

the medication you take is to maintain the TSH/T3/T4 ie to replace the problem with the thyroid the the symptoms you describe are from the Hastimoto's which caused the problem with the thyroid in the first place so you can consider two medical problems - one the decrease in the hormone from the thyroid and two an autoimune codition -one you can fix -one you have for life. So your Doctor has treated the lack of hormone with the tablet you take but has not treated the symptoms of the Hastimoto - Some Doctors have problems uinderstanding this - if you have a look at the self help forum I suggested you will find like here people affected use many different ways to overcome the Hastimoto symptoms from medication to diet
It is good that you are seeing a rheumatologist they are the ones to see for autoimune problems.

Fibromyalgia has similar symptoms fatique,brain fog etc but it has one that Hastimoto's does not have extreme pain

 
I been taking the tablet for over 2 years and my TSH etc are ideal but I still have symptoms
6 months is not the same as 2 years, so I doubt very much that she is at an ideal level yet.
Optimal levels that I have seen suggested - in multiple places - are:
TSH - 2 or less
FT4 - top half of range
FT3 - top 1/4 of range
RT3 - less than 15
not to mention some people need a combination of both T4 and T3 to feel better - but it takes time to determine if that is needed.
Hastimoto's
in the interest of avoiding confusion, it is spelled Hashimoto's - not hasti..
 
it is spelled Hashimoto's - not hash.
the joys of essential tremor - the "T" is above the "H" so a temor changes it to hastimoto - it would make it much better for the inflicted to have a spell checker on this forum currently my Microphone is not working so can not use Dragon Naturally speaking to enter the posts at present (you have no idea of how long it takes for me to type this post and to correct the mistypes).
 
Optimal levels that I have seen suggested - in multiple places - are:
Wow, thank you for such a clear orientation! 👐
I've kept trying to understand, but I find it hard to see what's right, so have trusted my "experts" up to now.
My TSH was <2 Dec., 1 year ago it was above=worse, fT4 is 55% of the range, up from 50% = better.
But my fT3 is only at 21% of the given range, down from 38% a year ago, 50% a year before that, not >75%!
And I haven't shown that recent decrease to my GP yet, who does educate himself about thyroid.
rT3 seems seldom automatically done, never had it, but maybe it's about time, esp. seeing my energy decline?

My TAK is small = OK, my TPO/MAK just under the max, much higher a year earlier, TRAK normal, lab again said nothing autoimmune to be seen. My IgG4 is too high, like always, but the docs can't find why. It does point to something autoimmune a little bit. Iron suddenly plunged in Dec (3 % of the range, down from 45% 2 months before), that's also stepped by me cos I had so much else to look at.

May surprise people who know me, but at the moment I'm a bit bored with all this health stuff 😛
Now if I could just quickly suss it all out, and then... 🧐
Edit: What just cheered me up was thinking I'd need ages to find older bloods, but I recently ordered it by specialty, which means it now only took 10 seconds....

Oh well, talk with my GP about these and the new bloods that were taken by my cardio yesterday, might be more fitting than the ideas of the TCM/health practitioner....
 
Last edited:
But my fT3 is only at 21% of the given range, down from 38% a year ago, 50% a year before that, not >75%!
you might be one of those that needs T3 added to your regimen...

rT3 seems seldom automatically done, never had it, but maybe it's about time, esp. seeing my energy decline?
docs here seem to think that the RT3 is a waste of time and not helpful - despite many sources suggesting it is actually useful when used in conjunction with the other, more common tests. It is not useful by itself, this is true... but including the whole group, it is useful to get a better picture of what is going on.
if your FT3 is low, but you have a high RT3 - that suggests a conversion problem... something you may want to research a bit more on.

my TPO/MAK just under the max, much higher a year earlier, TRAK normal, lab again said nothing autoimmune to be seen.
uh, yes there is autoimmune to be seen... high antibodies say this loud and clear.. and it is called Hashimoto's (or Graves if you are hyper)

this is from the Thyroid Change website about thyroid antibody tests (backed up by research papers)... the numbers listed in the middle are the reference range numbers that the named doctors use... there are other ranges out there - they vary from lab to lab... some of which are extremely outdated.
1676056942965.png


It is also worth noting that many hypothyroid patients do tend to have low iron levels, as well as other nutrient deficiencies.. namely B12, D, and magnesium - but there are others as well.

It really is a fine balancing act with all of this - including affecting how we feel in general, pain levels, and so on.
 
the joys of essential tremor - the "T" is above the "H" so a tremor changes it to hastimoto - it would make it much better for the inflicted to have a spell checker on this forum currently my Microphone is not working so can not use Dragon Naturally speaking to enter the posts at present (you have no idea of how long it takes for me to type this post and to correct the mistypes).
I think i understand now - thank you for the clarification on the miss type.
hope you can get a new mic, or fix you existing one soon!

lol, i just realized - I use a split, ergo keyboard, so for me, that type of error would result in a G, not a T

also, just a thought - not sure what you use for a browser, but Firefox has a built in spellchecker. you might check in your browser settings to see if what you use also has one that just needs to be turned on.
 
Status
Not open for further replies.
Back
Top