Hello from Scotland - getting a fibromyalgia diagnosis issues

[Kimba]

Don't have an actual diagnosis. One doctor said she suspected I have it. The doctor told me to go swimming once a week. Tried with another doctor, same reply.

Maybe it's because I've also got mental health issues so they see that and think it's psychosomatic. Even my psychologist had said something similar. Drives me nuts and makes me question if it's all in my head.

Started with IBS in my teens, then I developed TMJ in my early 20's. I started getting pain in my wrists and ankles, they would feel tight and a little stiff to move. That when I started pushing the doctors. I was tested for everything under the sun. Nothing to show.
Just ended up ignoring the pain, the headaches and the fatigue.

The only problem I have now, the reason I can't just ignore it all, is my little boy. My relationship fell apart a few months after I fell pregnant. Barely had any pain in my hips and jaw. A year after he was born it all came back with vengeance.

Has anyone else had issues getting diagnosed? How do you manage your symptoms? Does medication work for you? Do you do stretches, pilates, yoga etc?

Thank you if you managed to read to the end. Really appreciate it

 

[Dooi]

It's unfortunate that a doctor might contemplate mental health issues when also trying to diagnose a condition, pain, or fibromyalgia.

In my experience, and through the experience of others, finding a doctor willing to investigate and run diagnostics can sometimes be arduous. Also, there are many doctors that dismiss fibromyalgia outright. I'm not intending to suggest you may have fibromyalgia, but finding a doctor that's open minded towards it may be helpful, even if just to eliminate it as the root cause of your pain and fatigue.

I have found exercise to help with both my symptoms, and most certainly for mental health issues if they're related to anxiety and/or depression. Numerous studies, and my experience first hand, have shown that exercise helps with my fatigue (opposite of common logic), and certainly with my mental stability.

Another remedy I've found recently is meditation. Even just 10-15 minutes per day; it can be transformational, especially if you feel any despair or frustration.

 

[Jemima]

Hi Kimba,

I'm so sorry to hear you've had such a lame duck response from your doctors. Mental health issues shouldn't stop them taking your other symptoms seriously. I struggled with depression for more than twenty years before my fibro fully arrived, and there are so many people here in the forum with all sorts of other mental health issues - lots of things can overlap. Plus, of course, depression is actually a symptom of fibro, so there's that too!

All of that said, while I was really lucky to get in front of a great doctor who gave me a diagnosis, in terms of treatment all the things that have actually helped me didn't come from conventional medicine. Some people find some relief from fibro with medications such as duloxetine or amitriptyline, however others (including me) experience bad side effects and decide to look elsewhere. Thankfully, there are lots of other treatment/management ideas that you can explore - and that might help you. Most of us seem to find that building up a tool kit of lots of little strategies can add up to make a big difference over time.

You'll find a pinned post from admin Sunkacola at the top of the General Discussion section of the forum with her top tips for managing fibro. Whether this is what you're dealing with or not, I'd say that post is a really good place to start! For me personally, the things that have been useful include developing a pretty dedicated stress and sleep management plan, doing light exercise almost every day, and taking certain supplements. I also had a therapist work with me to help me accept that my pain isn't a threat, so I could let go of the stress response that kept retriggering my symptoms.

If you poke around the threads here on the forum, you'll probably notice something pretty fast, which is that all of us seem to respond more or less to different things - different medications, supplements, exercises, diet, types of meditation, etc. Frustratingly, we all have to act as our own guinea pigs, and experiment until we find some relief. The good news is that this game plan can work pretty well. Through figuring this stuff out, I'm now about 400% better than I was! It's not perfect by any means - I still have better and worse periods, and I don't expect to ever get back to how I was before fibro - but I no longer feel as if I've lost control of my life. I really hope you can get to that too.

I would say, even if you don't get a diagnosis, going through the process of getting to know and understand what's going on inside your body and what helps is always a positive. If you're satisfied that your doctors ruled out everything else effectively, you can choose whether to keep pursuing a fibro diagnosis or not. If you do still want to, you can keep pushing to find a doctor open to exploring chronic pain and fibro properly, or you could ask if your current ones can talk you through how they would treat fibro, and if they'd be willing to try something to see if you respond. But, keep in mind that those medications are pretty hard ball, so do your research before starting to take them - and ask here in the forum if you want to talk to people who have been where you are!

You'll be taken seriously here Good luck.

 

[Jemima]

P.S. Hello back from Portugal!

 

[Kimba]

Thank you for you reply and moving my post.
Did consider paying privately for a doctor but Currently unemployed, so maybe I should keep pushing the doctors for a confirmation. I can imagine it's disheartening for anyone to go through what I have. I can see, I'm not the only one too.

Glad to hear that you found exercisesand meditation helps. I've been doing some gentle post partum pilates.
Totally agree, finding that right the right ones it hard. Knowing your limits as to not cause more pain the next day. That's the hardest.
Have you found swimming helpful?

Meditation is hard to practice. It's all a work in progress isn't it?

 

[Kimba]

Hi Kimba,

I'm so sorry to hear you've had such a lame duck response from your doctors. Mental health issues shouldn't stop them taking your other symptoms seriously. I struggled with depression for more than twenty years before my fibro fully arrived, and there are so many people here in the forum with all sorts of other mental health issues - lots of things can overlap. Plus, of course, depression is actually a symptom of fibro, so there's that too!

All of that said, while I was really lucky to get in front of a great doctor who gave me a diagnosis, in terms of treatment all the things that have actually helped me didn't come from conventional medicine. Some people find some relief from fibro with medications such as duloxetine or amitriptyline, however others (including me) experience bad side effects and decide to look elsewhere. Thankfully, there are lots of other treatment/management ideas that you can explore - and that might help you. Most of us seem to find that building up a tool kit of lots of little strategies can add up to make a big difference over time.

You'll find a pinned post from admin Sunkacola at the top of the General Discussion section of the forum with her top tips for managing fibro. Whether this is what you're dealing with or not, I'd say that post is a really good place to start! For me personally, the things that have been useful include developing a pretty dedicated stress and sleep management plan, doing light exercise almost every day, and taking certain supplements. I also had a therapist work with me to help me accept that my pain isn't a threat, so I could let go of the stress response that kept retriggering my symptoms.

If you poke around the threads here on the forum, you'll probably notice something pretty fast, which is that all of us seem to respond more or less to different things - different medications, supplements, exercises, diet, types of meditation, etc. Frustratingly, we all have to act as our own guinea pigs, and experiment until we find some relief. The good news is that this game plan can work pretty well. Through figuring this stuff out, I'm now about 400% better than I was! It's not perfect by any means - I still have better and worse periods, and I don't expect to ever get back to how I was before fibro - but I no longer feel as if I've lost control of my life. I really hope you can get to that too.

I would say, even if you don't get a diagnosis, going through the process of getting to know and understand what's going on inside your body and what helps is always a positive. If you're satisfied that your doctors ruled out everything else effectively, you can choose whether to keep pursuing a fibro diagnosis or not. If you do still want to, you can keep pushing to find a doctor open to exploring chronic pain and fibro properly, or you could ask if your current ones can talk you through how they would treat fibro, and if they'd be willing to try something to see if you respond. But, keep in mind that those medications are pretty hard ball, so do your research before starting to take them - and ask here in the forum if you want to talk to people who have been where you are!

You'll be taken seriously here Good luck.

Hello Portugal!

It's a sucky situation. Ended up giving up pushing for a few years. Think it was four years ago, that one doctor said she suspected it. Ironically she did the trigger points test. How long did it take you to get a diagnosis?
Totally agree that things can overlap. For a time I believed I was just lazy and needed to move more. Always came back the next day.
How are you managing your depression now?
Ahhh it's a symptom of fibro too

I'm glad you managed to get a great doctor
Amitriptyline is horrendous. Although a few of my friends have sworn by it. I've tried a few anti depressants, with those darn side effects. I guess some of us are sensitive to medications?
I'm glad there are other treatment options.
I've been working along side a physiotherapist. Do notice some relief for a week and then it comes back. Having a toolkit sounds like a wise thing to build. No one knows your body better than yourself.

I will check out that post. Thank you
It's so good to hear that you've had some brilliant support and coming to understand how your body reacts to stress.
I've often wondered if our diets come into play as well? As I saw a documentary called the gut: our second brain. Its really interesting. if you haven't seen it yet, I'd totally recommend.

Good days and not so good. That would be the dream! Far and few flare ups. I will need to have a good look through this forum. Thank you again.

 

[Jemima]

Hey Kimba!

So, long rambling answers coming up....!

How long did it take you to get a diagnosis?

The first time I went to the doctor for fibro pain was around seven years ago, and the doctor I saw then had no clue, and was entirely unhelpful. I then had a horse riding accident and damaged my spine, and that overshadowed everything else going on in my body for a long time! Finally, a couple of years ago - following a series of really tough life events - my fibro got much, much worse, and became by far the loudest thing in my body. I was more or less bed bound for around 5 months, and in really a lot of pain. I was also experiencing fog, severe depression, fatigue, speech issues, and short episodes of disassociation where I would have no memory of what just happened afterwards.

At that point, I had a new family doctor, and happily she knew exactly what we were dealing with right away. She went through all the thorough testing to eliminate everything else and finally landed conclusively on fibro - no trigger point tests to be seen. So - to make a long story short - it took a long time, but probably wouldn't have if I hadn't had the accident! That is, so long as I found a good doctor. It breaks my heart that so many people are not taken seriously.

How are you managing your depression now?

The supplements I take that I feel tackle my depression are lithium orotate (low dose - 5mg) which helps level out swings and eases negative thinking, and magnesium glycinate which helps me with anxiety. I exercise (swim/walk - I used to do weight training but can't any more) and do breathwork. I also use a light therapy app called Lumenate. With all of that in mind, I still have pretty bad depressive episodes from time to time. I think by now I've taken almost every antidepressant out there, and reacted badly to all, so self-management is where it's at for me at this point I think that talking honestly and maintaining a support network is also very important.

I guess some of us are sensitive to medications?

I am certain that I am - and many people here on the forum have said the same thing. Perhaps it's all part of the pattern!

I've often wondered if our diets come into play as well?

In my case, I spent about seven months working through a strict elimination diet and tried keto and fodmap. I didn't find any foods to be triggering in particular, but know that if I eat junk and generally don't look after myself, my symptoms get worse. If I eat a wholesome, balanced diet without overdoing anything, I fare much better.

That said, I've come across a lot of people who eventually tied their symptoms to a food sensitivity. An old friend of mine was diagnosed with fibro and CFS and literally spent three years in bed - her whole life ground to a big devastating halt. Nothing helped, until she went keto - and now she's 100% recovered, but relapses quickly if she hits the carbs. Her doctors don't know what to make of it! So, experimenting to see if a food issue might be at play is well worth doing.

There seems to be so much evidence building up now of the gut-brain connection and its importance for wellness. I will check out that documentary!

For a time I believed I was just lazy and needed to move more.

I did this too! I kept blaming myself for not being able to push through all the time - but that's one of the things with fibro - and proably with other chronic pain conditions - the harder you push, the more it kicks your ass. Self care/management is really important, but I think trying gently to find a balance is key, rather than constantly berating ourselves that we need to do better. There have been some interesting discussions here about how common perfectionist tendencies are among fibro sufferers. And of course, with fibro it's impossible to be perfect, so there's quite a lot of personal work to do on coming to terms with boundaries. It's tough, but also all pretty interesting!

 

[JayCS]

Hi Scotland* , ehm, Kimba:
Has anyone else had issues getting diagnosed?
Mine went pretty quickly, 4 months, because I made lots of parallel appts, incl. a 2nd rheumy and all the rest, 45+ docs in all to make sure I was ruling everything possible out. And my 2 GPs and I were thinking the years before that it might be fibro, without knowing exactly what it is. But each of the docs (& 1 alternative practitioner) only helped a tiny bit, the diagnosis didn't help much apart from pointing me to the forums.
How do you manage your symptoms? Pacing, incl. exercises only in short stints of 20'', pinpointing & stopping triggers, cryotherapy & cold showering, osteopathy then acupressure.
Does medication work for you? Meds were no help, herbs only a bit (I take passiflora), nor normal supps like B-vitamins, but now amino acids do, esp. GABA.
Do you do stretches, pilates, yoga etc? Always gentle & short, no long flowing movements or stretching. Alone & regularly, summing up to 3/4-2h/d.
My treatment types might be at around 90/100 now, I'll be updating the count next week; I think more than half were harmful...

* reminds me of when everyone in Europe used to watch the "European Song Contest", and this was how each of the "countries" were addressed, just so our American friends understand that this is allusion, even tho they will never understand the ESC - we don't ourselves....

 

[seniorzala]

Kimba!
be will worth seeing: CRP,TSH /T3,T4/,ANA- ELISA, ENA screens, LDH,Homocistein, Spinal MRI +Sacrum

 

[Uhura]

A supplement that helps me with anxiety is Kava Kava. I also take prescription ones for nerve pain, which is the worst of my symptoms. I take Lyrica. And I have epilepsy and other things. And take other medicines and supplements but Kava is the main one for anxiety.
I do at least some exercise most days. And need Melatonin to help me sleep. Water Walking helps a lot because I can do that for longer periods of time than walking outside. I hope you can find what works for you.

 

[JayCS]

Uhura, is antianxiety food and amino acids (e.g. Trudy Scott) something worth trying for you?
Had to look up water walking, I cdnt really imagine that being helpful, then realized I'd done what they called aqua jogging in the fibro/rheum. clinic. It was OK, but really tough on some days...

 

[Kimba]

Hey Kimba!

So, long rambling answers coming up....!


The first time I went to the doctor for fibro pain was around seven years ago, and the doctor I saw then had no clue, and was entirely unhelpful. I then had a horse riding accident and damaged my spine, and that overshadowed everything else going on in my body for a long time! Finally, a couple of years ago - following a series of really tough life events - my fibro got much, much worse, and became by far the loudest thing in my body. I was more or less bed bound for around 5 months, and in really a lot of pain. I was also experiencing fog, severe depression, fatigue, speech issues, and short episodes of disassociation where I would have no memory of what just happened afterwards.

At that point, I had a new family doctor, and happily she knew exactly what we were dealing with right away. She went through all the thorough testing to eliminate everything else and finally landed conclusively on fibro - no trigger point tests to be seen. So - to make a long story short - it took a long time, but probably wouldn't have if I hadn't had the accident! That is, so long as I found a good doctor. It breaks my heart that so many people are not taken seriously.


The supplements I take that I feel tackle my depression are lithium orotate (low dose - 5mg) which helps level out swings and eases negative thinking, and magnesium glycinate which helps me with anxiety. I exercise (swim/walk - I used to do weight training but can't any more) and do breathwork. I also use a light therapy app called Lumenate. With all of that in mind, I still have pretty bad depressive episodes from time to time. I think by now I've taken almost every antidepressant out there, and reacted badly to all, so self-management is where it's at for me at this point I think that talking honestly and maintaining a support network is also very important.


I am certain that I am - and many people here on the forum have said the same thing. Perhaps it's all part of the pattern!


In my case, I spent about seven months working through a strict elimination diet and tried keto and fodmap. I didn't find any foods to be triggering in particular, but know that if I eat junk and generally don't look after myself, my symptoms get worse. If I eat a wholesome, balanced diet without overdoing anything, I fare much better.

That said, I've come across a lot of people who eventually tied their symptoms to a food sensitivity. An old friend of mine was diagnosed with fibro and CFS and literally spent three years in bed - her whole life ground to a big devastating halt. Nothing helped, until she went keto - and now she's 100% recovered, but relapses quickly if she hits the carbs. Her doctors don't know what to make of it! So, experimenting to see if a food issue might be at play is well worth doing.

There seems to be so much evidence building up now of the gut-brain connection and its importance for wellness. I will check out that documentary!


I did this too! I kept blaming myself for not being able to push through all the time - but that's one of the things with fibro - and proably with other chronic pain conditions - the harder you push, the more it kicks your ass. Self care/management is really important, but I think trying gently to find a balance is key, rather than constantly berating ourselves that we need to do better. There have been some interesting discussions here about how common perfectionist tendencies are among fibro sufferers. And of course, with fibro it's impossible to be perfect, so there's quite a lot of personal work to do on coming to terms with boundaries. It's tough, but also all pretty interesting!

Hello
Thank you for your detail reply

I'm sorry to hear about the horse riding accident. That sounds like it was very painful. Bloody doctors. I have heard that it can take some people a long time to get a diagnosis. I guess there are a lot of doctors that are still very skeptical about it. I know that here, it's only recently gone through the government to be recognised as a condition. Even then, there are still a lot of doctors that haven't done the research/had the training for diagnosis and management.
It's just really good that you managed to get one that was on your side

It's sounds like you have a brilliant management system in place. You know what works for you and what doesn't. I will need to check out those two things that you use for anxiety and depression. Have you found that sleep is something you still struggle with or has it improved since before? It's totally understandable with depression and anxiety to appear out the blue or even just build up to terrible episodes. It definitely helps to know that your not the only one dealing with it and to be surrounding with people who love and care for you.

Junk food is terrible eventhough it can taste so good haha. I'm attempting the fodmap but I've never tried keto.
I'm glad your friend was able to find the keto diet helped them. I guess, it's all a trial of elimination to figure out what your limits are in everyday life.
No one knows your body better than you.

Did you manage to see that documentary?

I will need to have a good look through the forums. At this moment, I'm in the middle of transitioning my son to a bed and potty training. Definitely wouldn't recommend doing both at the same time! But for now, I'll try to improve my self management a little better.
Getting a good sleep will have to wait as this little guy is definitely not a through the night sleeper. How do single parent do it??

Anyways thank you so much for your indepth reply. I really appreciate it. Its been really interesting to hear your journey andbgow you've managed. I hope you are having a good weekend and the weather hasn't been to drastic where you are?

 

[Kimba]

Kimba!
be will worth seeing: CRP,TSH /T3,T4/,ANA- ELISA, ENA screens, LDH,Homocistein, Spinal MRI +Sacrum

Hello

Thank you for your reply.
I'm not sure what all of these are. Would you be able to describe?

 

[Kimba]

A supplement that helps me with anxiety is Kava Kava. I also take prescription ones for nerve pain, which is the worst of my symptoms. I take Lyrica. And I have epilepsy and other things. And take other medicines and supplements but Kava is the main one for anxiety.
I do at least some exercise most days. And need Melatonin to help me sleep. Water Walking helps a lot because I can do that for longer periods of time than walking outside. I hope you can find what works for you.

Hello
Thanks for your reply

Do you have a sensitive stomach? Just I'm a bit wary of taking anything that's not from my doctor or recommend by a pharmacist.
Still in the process of elimination diet to figure out what foods are giving me in flare ups.
Nerve pain, I'm sorry to hear. Did you find the Lyrica helps? I think I asked my doctor for this year's ago and she straight up refused haha.
I've also seen a physiotherapist through the NHS here and they just told me to go swimming. Paid privately for a physio this year and he seems to be working wonders as I had two Spinal disks slightly out of place and a lateral pelvic tilt. The leg pain is probably the worst.
For the time being, my options are limited when it comes to medications.
Have you found breath work to help with anxiety? Another poster mentioned it and I started a meditation app last week called meditito.
I did try melatonin a few years ago but I'm really bad for fighting that initial sleepy feeling.
Although I do remember feeling a little better rested after taking it.
Water walking, that was something that was recommended to me. I'm glad you find it helps you and that you have things in place that make life a little more bearable.

I really appreciate that you've taken the time to describe what helps you.

 

[Jemima]

Hello
Thank you for your detail reply

I'm sorry to hear about the horse riding accident. That sounds like it was very painful. Bloody doctors. I have heard that it can take some people a long time to get a diagnosis. I guess there are a lot of doctors that are still very skeptical about it. I know that here, it's only recently gone through the government to be recognised as a condition. Even then, there are still a lot of doctors that haven't done the research/had the training for diagnosis and management.
It's just really good that you managed to get one that was on your side

It's sounds like you have a brilliant management system in place. You know what works for you and what doesn't. I will need to check out those two things that you use for anxiety and depression. Have you found that sleep is something you still struggle with or has it improved since before? It's totally understandable with depression and anxiety to appear out the blue or even just build up to terrible episodes. It definitely helps to know that your not the only one dealing with it and to be surrounding with people who love and care for you.

Junk food is terrible eventhough it can taste so good haha. I'm attempting the fodmap but I've never tried keto.
I'm glad your friend was able to find the keto diet helped them. I guess, it's all a trial of elimination to figure out what your limits are in everyday life.
No one knows your body better than you.

Did you manage to see that documentary?

I will need to have a good look through the forums. At this moment, I'm in the middle of transitioning my son to a bed and potty training. Definitely wouldn't recommend doing both at the same time! But for now, I'll try to improve my self management a little better.
Getting a good sleep will have to wait as this little guy is definitely not a through the night sleeper. How do single parent do it??

Anyways thank you so much for your indepth reply. I really appreciate it. Its been really interesting to hear your journey andbgow you've managed. I hope you are having a good weekend and the weather hasn't been to drastic where you are?

Hey Kimba,

Thanks for such a thoughtful and sweet message! I still struggle with sleep a lot, but it's been a little better since I started taking magnesium glycinate. Sleep is just such a vicious catch 22 for us all - we know that we need sleep to feel better, but we feel too crap to rest properly. It's like the ultimate dangling carrot!

Wow, you're officially badass, doing bed and potty training in one go. I have no idea how single mothers do it - let alone those dealing with chronic illness too. Help or not, I'd say you're the definition of amazing! My partner had kids before we met, so I got to be the cool stepmum that landed gracefully after all the messy stuff was over. That said, the teen years can be messy in a different way

I haven't had time to see the documentary yet. I'm overloaded with work this week, and so of course my pain has ramped right up. I'm squirming through it and looking forward to some down days next week!

It's actually an unusually cool summer here in Portugal, which is pretty strange. Normally by now we'd be seeing temps of at least 40-45°C by now, but it's sitting around 25-30°C which is luscious! The rest of southern Europe is taking a pasting with a lot of fires, so we're very grateful. It can be so scary when the fires get really crazy. How is it up in Scotland - is it warmer than usual there too?

Have a wonderful weekend