Feeling frustrated

Em2334355

New member
Joined
Jul 31, 2021
Messages
1
I’m not use to posting on these types of things however I am pretty new to my condition and struggling so just wondering if anyone have or is in the same position….

I had arthritis as a child and have joint hyper mobility syndrome. I was discharged at 16 and had no issues for 10 years

January of this year I had a flare up on my knee that was effected as a child needing steroids and physiotherapy. I was also experiencing other symptoms of fatigue, aches and pains in other joints, poor sleep, burning/shaking sensations and cold and flu symptoms

Following some time I was re- diagnosed with oesthoarthris and fibromyalgia

was prescribed different medication and felt that my fibromyalgia was under control however felt that I was getting worst with other symptoms such as pain and inflammation in my thumb joint(resulting in my struggling to write) and inflammatory in my shoulder with limited mobility. Swollen face (dentist saying it is TMJ)

my immunity has been hit with glandular fever, thrush, lymph node infections.

I saw my consultant today and he said this is all down to my fibromyalgia and the mediation is not dealing with all of my symptoms. And that the inflammation and low immunity is down to the fibromyalgia.



please correct me if this does sound like symptoms of fibromyalgia (I know that a lot of symptoms can cross over)

however I was fine for 10 years and now I just feel like I’m not being listened to and just saying it’s down to fibromyalgia and giving more medication

just feel frustrated that I don’t feel I am getting better
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
761
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
I’m not use to posting on these types of things however I am pretty new to my condition and struggling so just wondering if anyone have or is in the same position….

I had arthritis as a child and have joint hyper mobility syndrome. I was discharged at 16 and had no issues for 10 years

January of this year I had a flare up on my knee that was effected as a child needing steroids and physiotherapy. I was also experiencing other symptoms of fatigue, aches and pains in other joints, poor sleep, burning/shaking sensations and cold and flu symptoms

Following some time I was re- diagnosed with oesthoarthris and fibromyalgia

was prescribed different medication and felt that my fibromyalgia was under control however felt that I was getting worst with other symptoms such as pain and inflammation in my thumb joint(resulting in my struggling to write) and inflammatory in my shoulder with limited mobility. Swollen face (dentist saying it is TMJ)

my immunity has been hit with glandular fever, thrush, lymph node infections.

I saw my consultant today and he said this is all down to my fibromyalgia and the mediation is not dealing with all of my symptoms. And that the inflammation and low immunity is down to the fibromyalgia.



please correct me if this does sound like symptoms of fibromyalgia (I know that a lot of symptoms can cross over)

however I was fine for 10 years and now I just feel like I’m not being listened to and just saying it’s down to fibromyalgia and giving more medication

just feel frustrated that I don’t feel I am getting better
Hi Em,

Welcome! Sorry I didn't comment here sooner - I'd read your post the other day and meant to reply, but then somehow lost track! Understanding of fibromyalgia is shifting pretty quickly these days, and studies from earlier this year confirmed that it does impact immunity, and is in fact most likely an autoimmune condition. We've had quite a lot of conversations here recently about having trouble with swollen glands and lymph nodes, and TMJ, so you're not alone on those issues. Thrush and fibro are also common co-conditions, although I don't think it's understood why yet. Fibro can also cause phantom thrush-like sensations.

It does suck that your doctor didn't show any interest in investigating further, and wasn't a little more compassionate!

The thing with fibromyalgia is that it does tend to ebb and flow, and when symptoms flare they can take a while to come back down. That said, it sounds like you've had a really tough year with things being so bad for so long. Did anything happen in your life around the beginning of the year that might have triggered this recent shift - did you go through a period of stress, or that was more intense than usual, and have you still got stuff going on that could be triggering you?

For my own experience, whenever my symptoms flare - and when they do, they can look a lot like everything you describe alongside pain and fatigue - I need to go into a pretty dedicated period of self-care to start to pull everything back under control. If I'm doing too much, then I have to slow down, get my sleep hygiene on, dial in nutrition and hydration, and be more cautious about pacing. If there's too much stress in the picture (for example following a bereavement, money trouble, work pressure, relationship issues etc.) then I need to focus on stress management. Whenever we get stressed, our bodies put their energy into our sympathetic nervous system (fight/flight/freeze) and divert it away from our parasympathetic nervous system (rest/repair/digest), which means that resources are not getting used to heal, maintain and stay healthier. For us fibromites, the fallout of this can be huge. I've found that meditation, breathing exercises, relaxing activities, and trying to manage triggers can help turn this around for me, but it can take a while!

Other things that might cause a change in symptoms include a reaction to a medication (these can appear quite some time after first taking a drug), a dietary sensitivity, or a new chemical sensitivity. You could try an elimination diet to see if you can find anything that's causing issues, and examine the cleaning/skin care/laundry products you're using. I know all of this sleuthing sucks, but occasionally people have a breakthrough.

I'm so sorry - I can only imagine your frustration. Our wise moderator here in the forum, Sunkacola, often talks about how we all have to be our own advocates and hunt down our own solutions with this condition. Taking that approach has helped me immensely, but I also needed to get myself in a mindset of being accepting every time something I tried didn't work, because there's always going to be a lot of those! Meanwhile, the more we worry, the more we put ourselves in a state of stress, which serves as another trigger on the pile - so it's quite the balancing act to master. Speaking of Sunkacola, she outlines a really good guide to managing fibro here that you can read if you haven't already - maybe nothing new, but maybe some fresh ideas!

If you keep having trouble - and you may already be at this point - you could consider trying to get yourself in front of a different doctor, or push your doctor harder to help you figure this out. Reviewing your medication could be worth doing too, to see if the culprit is in that mix.

I wish you the best of luck with everything. I know it's a lot. I hope you find something that helps very soon!
 

Auriel

Senior member
Joined
Jun 8, 2021
Messages
439
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
Hi @Em2334355 welcome to the forum ☕🍪 for someone who doesn’t post on these things your doing really well, you were so young to have arthritis I can’t even imagine what that must have been like, but fatigue, aches and pains in joints, poor sleep, and burning and shaking sensations do correlate with fibro symptoms, I also have tmj, some osteoarthritis and do get a lot of other female type issues, I don’t know if the other things your experiencing are fibro related? sometimes when a dr learns you have fibro they sometimes have a tendency to put anything and everything new down to it (which is kind of annoying). what I found helpful was better sleep, stress elimination (especially people, no drama, needy’s or aggressive)I also took out gluten wheat and sugar and take magnesium and b vitamins, I also drink green tea (it just seems to help with the weird burning moving sensation in my legs) and I also have a cream from living well nutraceuticals (which is really good, anyway, nice to have you on here though kinda sorry for the reason 💖💞💖
 

JayCS

Very helpful member
Joined
Sep 5, 2020
Messages
908
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Hi @Em2334355 - I thoroughly agree with @Jemima and yourself, that while this inflammatory can easily be FM-co-morbid, but needs to be checked more thoroughly, whether begrudgingly with this doc or if possible another.
 

wiserlady

Active member
Joined
Dec 20, 2021
Messages
30
Hello, I am new hear. Sorry to hear you are struggling and so worried about this, do understand as going through a very similar experience with my own. Doctors - in the UK anyway, say well it is fibro, and then expect you to suck up whatever the symptoms are no matter how debilitating or painful. Different things help different people. At the moment I am trying 5 htp, have been on it for a few days. I understand that even if it is a good idea for that person to take it they may need to try various brands and doses before they get it right. Am not saying it is the answer for you, only you would know that. We all struggle in different ways, some get a lot of help from their family, some work, some have a lot of responsibility, it all has to be considered in the big picture. Some will have it a lot easier than others because of these things. But that is the same with all illness. Six months ago I knew nothing at all about this illness, never even heard of it. It is amazing how our lives can change, so quickly, and if they can change for the worst in some ways they can change for the better in others.

I think that everyone has fibro for a different reason - mine was brought on by taking asthma inhalers, steroids and montekulast pills. Which I would not take now if you paid me. And we all have different symptoms and different physical problems from it.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,752
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
mine was brought on by taking asthma inhalers, steroids and montekulast pills. Which I would not take now if you paid me.
Just asking for clarification, please, because I (and maybe others) am wondering about this comment. You have stated in other posts that you do take steroids at times and have said that you have good reasons for doing so, and do so with knowledge and careful judgement. But here it seems you are saying that taking steroids was in your opinion part of what brought on your fibromyalgia in the first place.

Are both things true? I think they possibly could be, because steroids are a double-edged sword, which can be helpful and can be hideous in effect on a person.....but your following that by saying you wouldn't " take now if you paid me" makes it unclear.
Would you mind elaborating on this?
 

wiserlady

Active member
Joined
Dec 20, 2021
Messages
30
I had to take steroids because I was getting what the doctors told me were very difficult asthma attacks regularly. I was often taken into hospital for weeks with it. They insisted it was asthma and insisted I take steroids. It helped. It is montekulast I would not take if you paid me. I have done research since then that tells me this can happen, they can give you fibro or churg strauss which are not that dissimilar.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,752
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
I had to take steroids because I was getting what the doctors told me were very difficult asthma attacks regularly. I was often taken into hospital for weeks with it. They insisted it was asthma and insisted I take steroids. It helped. It is montekulast I would not take if you paid me. I have done research since then that tells me this can happen, they can give you fibro or churg strauss which are not that dissimilar.
Ah, now I understand. Thanks for the clarification, wiserlady. :)

One reason that a forum such as this is so useful is that it gives people information they would probably never get from their medical professionals. Everyone being different, what is good or bad for one is not necessarily the same for another, but I think it is valuable to put the information out there if a certain medication helped or did not help, or might have even caused things to get worse. It's all good information to use in putting together each our own personal way of managing things.
 

wiserlady

Active member
Joined
Dec 20, 2021
Messages
30
Ah, now I understand. Thanks for the clarification, wiserlady. :)

One reason that a forum such as this is so useful is that it gives people information they would probably never get from their medical professionals. Everyone being different, what is good or bad for one is not necessarily the same for another, but I think it is valuable to put the information out there if a certain medication helped or did not help, or might have even caused things to get worse. It's all good information to use in putting together each our own personal way of managing things.
Yes, I understand why forums are there and how they work. That is why I thought I would give this forum a try.
 

Auriel

Senior member
Joined
Jun 8, 2021
Messages
439
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
We’re glad you did 😊🌟💗
 

Faustina

New member
Joined
Oct 18, 2021
Messages
8
✝️✝️Dear Wiser Lady,
I too suffer from asthma and fibro/cfids/mcs, etc... I took montekulast for a while too. This drug helped great for my lungs and sinus assistance, but it did a number on my brain. It really got my thinking dark and muddled. I already had the fibromyalgia for years before I took this medicine for asthma, and have never tolerated meds well. I currently just use the controller and reliever metered doses everyday to control asthma symptoms. I had hoped to be able to get off of even that, but that hasn't worked out. I suppose the respiratory therapist was right when he told me that asthma in adult onset does not just go away, and has a tendency to need more management as one ages.
 
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