Nervous Newbie

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qsj748

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DX FIBRO
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Hi guys, I’m just new here & still trying to get to grips with the site 🤦🏻‍♀️ I’ve had a really hard 18 months I’ve been suffering so badly. I’ve had loads of physical issues, which were being treated as individual problems until I done some research & realised all my symptoms fit the criteria for fibromyalgia or possibly multiple sclerosis. I know there is no blood test or specific test for diagnosing fibro. However my doctor took blood tests on Tuesday after me convincing him to look at all my symptoms possibly being caused by one condition. I am being checked for things like lupus, rheumatoid arthritis & other autoimmune issues. If they come back negative he said I will be looking at a fibro diagnosis. I don’t really know anything about it to be honest. All I know is that whatever is going on is absolutely soul destroying. I’m 37 with a 2 year old autistic son. It’s so hard being in constant excruciating pain & trying to be the best mum to my baby. Does anyone know what happens after a definitive diagnosis of fibro? Can any one give me any self help tips? I am so grateful for anyone who takes the time to read my post & any help & info will be greatly appreciated. Hope you are all doing well & it’ll be my pleasure to communicate with you all. Take care 💜
 

Ketch

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Joined
Mar 30, 2022
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27
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DX FIBRO
Diagnosis
06/2017
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Hello and welcome! It sounds like the "usual" course of things is happening as far as the doctors go. After they diagnose you, they try to find a combination of medications that will work for your pain and try to keep you as active as possible. Which sounds like you have your hands full, so they'll probably prescribe something for anxiety, too. As far as tips for self help, this site is full of them already and you have just said the magic words to open the gates, lol. Take time to read them, most the advice is good for all neuro/nerve type illnesses. Be sure to put your own care high on your list and don't be afraid! :)
 

JayCS

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Hi q and welcome in! :cool:
It's tough having to care intensely for someone with special needs when we have our own special need. But counter-intuitively it still means putting ourselves first, meaning letting go, pacing, learning to relax "all" the time, esp. during what we believe needs strain...
Most of us know what happens after a definitive diagnosis and all we're about is self help tips, so there's lots here for you to discover. Great starting point for all nervous newbies ;-P (and I've been forgetting to link this in my last welcome posts, so here's for y'all..) is sunkacola's newbie advice post ▶️ here. (Sunkacola's away a bit, but should be back some time soon).

What @Ketch has described is a fairly normal course of things. Many of us however find that meds do not work or harm us more than they help, e.g. by suppressing the pain, but causing more severe problems.... So actually this is a diagnosis that puts us back to square one, out by ourselves, or rather with each other, analyzing our symptoms, trigger hunting and trialling the hundreds of treatments aside from meds that there are, which if we do so all have to be tested for the right dose, whether med, food, physio or supp..., and cause problems (from overdose) in the process.
And the docs can only help by making sure there's nothing else.... I got many more symptoms checked out after my diagnosis than before it (it only took a few months to diagnose, cos I knew what I was doing and got loads of parallel appointments). I always thought there was something else, and finally the jabs triggered a second severe condition, MCAS, which revealed, it explained most things like oversensitivities I'd always had... - which isn't good, I'd've preferred not to know and to be back to like I was before them last Oct/Nov... but now it's there of course good to know. Again I'd researched a lot so that diagnosis also only took 2 months. Still getting a second opinion tho, the amount of my docs at my service is now over 50... 😜 Their contribution to my fibro was 10%, but their contribution to MCAS (supps & histamine management) is considerably higher, via the web, but also in real life....

Hope we can be of use to you! :)
 

qsj748

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DX FIBRO
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Hi Ketch 👋🏼

Thankyou so much for taking the time to actually read my post & making the effort to respond with such helpful information. It’s greatly appreciated. I already suffer from mental health conditions but I would say my anxiety has gotten so much worse the last 18 months. Obviously if I do get an official diagnosis I’m assuming (I may be wrong) that they should come up with some kind of treatment plan? I’ve tried to research what I can about fibro but I honestly cannot concentrate or retain information for some reason lately. I’m beginning to think I have narcolepsy too 🤦🏻‍♀️ I have never felt this level of exhaustion in my life. Like you said above I actually do have my hands full with my son. I’m actually worried I’m not meeting his needs because of my physical limitations. Is it a case of just trying to find the right plan & trying to maintain some kind of manageable pain etc? Thanks for making time to help me, I’m honestly so grateful 😊
 

Ketch

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Joined
Mar 30, 2022
Messages
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DX FIBRO
Diagnosis
06/2017
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State
ND
It's a bit like trying to become an Olympian athlete or something. It is forever, so your treatment of it becomes forever, too. Somethings will work, some won't and they may or may not be the same for the both of us! It is weird, for sure. Fibro has a brain fog associated with it that makes concentration difficult (and meds won't help that at all). Chronic fatigue is also part of the game. Those 2 things will likely get you into a sleep study to make sure it isn't something in your night habits. For me, it just is, not a sleep issue, probably for most as well. There's where the Olympian similarity really begins, you must care for yourself constantly and diligently through habits that allow you to meter out what energy you do have. The doctors can only help us in limited ways, the rest you can find here in many threads or you could always message me or just ask again like you did here. We all what you to be the best you can be! I'm glad you found it helpful and it is always my pleasure, you're welcome! :)
 

fimi

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DX FIBRO
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Hi @qsj748, I'm so sorry you're having a tough time. However, you've come to the right place as there's a lot of helpful support on here from others who have/are sharing the same experiences.
I have quite recently been diagnosed, but have suffered the illness for many many years. And although I let out a huge sigh of relief at receiving the initial diagnosis and being aware of what I was dealing with (as well as realizing I wasn't going bonkers!) I realized it didn't change much else! What I mean by this, is that I have been pacing myself and working with my own body for all these years anyway. After reading your post, this sounds as if you have been suffering for a while, and my advice would be to of course, listen to your doctor and any consultants you may see, but also as you have already mentioned, try and pace yourself and look into other self care options (there's a lot of advice on here of self care if you sift through). It must be very hard work caring for your 2 year old, but only you know your own body and only you can work out what your limitations are across the board...physical, mental, emotional. Keep strong and keep chatting, this site will help you...I can vouch for that! 🙂
 
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JayCS

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Obviously if I do get an official diagnosis I’m assuming (I may be wrong) that they should come up with some kind of treatment plan?
Hmm... well... if they often start with meds like gabapentin, pregabalin, duloxetine or amitriptyline / nortriptyline and pain killers. It depends on your tolerance of them if that makes any sense. Which they start with may depend on whether you have depression or not, but everything else there is trial & error. If they are good they will offer pain management sessions (understanding, coping, pacing) & physio. Both of these are dependent on if the people doing them are good, manage to connect / listen to you and tone down to the gentleness we need.
If you find functional docs they will go the more natural route, the same but more with supps and only a few meds if absolutely necessary.
Many of us do not feel as if it is a "plan" in that sense, more hit & miss, trial & error. So it's important to self-educate and self-advocate and come up with treatment plans ourselves, which we can ideally put into practice independently, but parts of it we can use the docs to help us do so, like getting the physio-prescriptions we need.
 

qsj748

Member
Joined
Apr 28, 2022
Messages
13
Reason
DX FIBRO
Country
UK
Hi guys, thanks for all the informative & motivational post’s. Here’s a quick update, got my bloods done to rule out the autoimmune stuff they were all fine. However, when I called back to speak to the doctor I had been dealing with for weeks I was told he wasn’t actually a full time doctor there & just a locum 😭 The practice arranged for a completely different doctor I’ve never even spoken to to call me today & guess what the call never arrived. Now the first doctor did say fibromyalgia was probably going to be the diagnosis of the bloods ruled out the autoimmune stuff. Doctors receptionist basically said that I’ll be seeing a different doctor now & her outlook may be completely different 😔 Now I am over the moon about my bloods being fine etc but I just felt I was getting somewhere & I'm now possibly back to square one. Can I ask does anyone suffer from extreme stomach issues with fibromyalgia? I had duodenitis in Jan/Feb of 2021 which was found by endoscopy & by December 2021 I had another & was diagnosed with a hiatal hernia on my oesophagus, a blood clot in my stomach, severe gastritis & duodenum problems & that my digestive tract was really pale. The took biopsies & fortunately they were also fine. Can I also ask if fibromyalgia can be brought on by things like a car accident etc? I’ve been trying to do some reading about it etc but I’ve had a bad week & probably didn’t get as much information learned as I wanted to. Anyway hope you are all keeping as well as possible. 💛
 

fimi

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Hi @qsj748, so sorry you're having a difficult time with your doctors, I know how frustrating it can be to think you're getting somewhere but you still end up with that block in the road. My advice woulld be (whichever doctor you see) to calmly and positively tell them of all your symptoms and how you feel. It took a long time for my own diagnosis, being tested and then left non the wiser with constant negative tests. Until I wrote it all down and changed my attitude at the doctors. I needed a diagnosis...
Your blood tests coming back normal are good! and a step towards some diagnosis (whether it is fibro I can't say) but every step is a step nearer. Also, as well as trying to get that important diagnosis, I would say to concentrate on self care and find out what helps your condition. As a diagnosis still leaves many fibro sufferers to find their own way of coping. Unfortunately, the fibro label doesn't come with instructions on how to fix it!!! If only...🤔

Regards a car accident, I believe they say an injury can be one of the possible triggers for the condition.

However, as you probably know, there is still a lot to learn about the condition. ( I think I wore my central nervous system out with stress 😢)

You mention stomach pain which I do get mildly now, but are able to manage with foods I eat. I find for that too much white bread can set me off so switched to wholemeal grain a while ago and I feel much better. The same goes for too much suger (and I have such a sweet tooth!!:cautious:).

I hope all this helps in some way, you will find so much help and support from others on here, so please keep chatting, you are not alone :)
 

sunkacola

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Hi Ketch 👋🏼

Thankyou so much for taking the time to actually read my post & making the effort to respond with such helpful information. It’s greatly appreciated. I already suffer from mental health conditions but I would say my anxiety has gotten so much worse the last 18 months. Obviously if I do get an official diagnosis I’m assuming (I may be wrong) that they should come up with some kind of treatment plan? I’ve tried to research what I can about fibro but I honestly cannot concentrate or retain information for some reason lately. I’m beginning to think I have narcolepsy too 🤦🏻‍♀️ I have never felt this level of exhaustion in my life. Like you said above I actually do have my hands full with my son. I’m actually worried I’m not meeting his needs because of my physical limitations. Is it a case of just trying to find the right plan & trying to maintain some kind of manageable pain etc? Thanks for making time to help me, I’m honestly so grateful 😊
Hi qsj748,
And welcome to the forum. there really is no treatment plan for fibromyalgia, because there is no known treatment for it. In other words, there is nothing that makes it better for everyone who has it. Doctors are most likely to prescribe pain medication of various kinds, depending on the doctor and their preferences, but many of us who have been dealing with fibro for years, including myself, do not see pain medication as being a good way to go, especially at the beginning. You can become dependent or even addicted to some of them and others either will not help or will result in seriously disturbing side effects.

I am not saying pain meds are never appropriate. I think all of us here take something at least now and then; I have pain medication I take when it is absolutely necessary. But I have found, as have others, that taking a very pro-active approach to your overall health is the best way to manage fibromyalgia. The more that you do this, and diligently experiment with different approaches in order to find what works best for you while remaining observant and ready to switch gears when necessary, the better you will feel overall and this will lessen your pain far better than just taking pain medication, which only masks the pain but does nothing to actually help your body.

I very much recommend that you start with my post about this and begin trying things immediately so that you set yourself on the road to good management of your symptoms. Ask any questions you may have, and remember we are here to support each other.
 

qsj748

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DX FIBRO
Country
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Hi guys, just a little update for you all. Today I got my fibromyalgia diagnosis, purely by coincidence I’ve seen it’s national fibromyalgia awareness day. They’ve started me on duloxetine which I have been on prior for mental health reasons & Im dreading taking it. I’m quickly going to bullet point all my health conditions if you don’t mind:

Emotionally Unstable Personality Disorder
Major Depressive Disorder
Generalised Anxiety Disorder
Complex Post Traumatic Stress Disorder
Hiatal Hernia on Oesophagus
Blood Clot In Stomach
Gastritis Of Whole Stomach
Duodenum Issues
Sinus Problems & Allergies
Migraines (Had since I was 7)

I’ve been dealing with all this most of my life, the stomach issues just over a year & a half & now the fibromyalgia diagnosis. As I’ve previously stated I have a 2 year old who is also going through assessments for autism & developmental issues. I honestly can’t think straight I’m so upset. I’m glad I’ve not been fobbed off but being told it’s a definite has hit me differently to I had expected it too. I’ve struggled for 20 years with things prior to this but this has instantly depressed me. Does anyone have any ideas or what you personally done to accept it? I feel terrible but not so much for myself how can I support my 2 year old & be the mum he needs & deserves if Im in constant pain & all the other health issues I have. I feel like I’m failing him & I won’t give him a decent quality of life due to me not being able to cope with all my ailments. I don’t mean this a pity party at all I know there’s people on here probably so much worse off etc it’s more to get tips & information that can make me see that I can live & provide a good life for my son. Love & strength to all of you thanks for reading 💙
 

JayCS

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Hi again,

that's quite a bit on your emotional plate too... 👐
Regarding "grieving" and accepting I wrote a kind of theoretical overview here., don't know if it's something like that you're looking for?
Having just seen the opposite I think the most important thing is looking for and allowing people to help you both and not to try to do it all alone.... And that's what you're doing here and with your and his docs etc. What he probably needs more than anything is love, being held and gently hugged or whatever his needs are, and that can be short quality time. That's for starters - I bet we have lots more to say and help you...! :cool:
 

qsj748

Member
Joined
Apr 28, 2022
Messages
13
Reason
DX FIBRO
Country
UK
@JayCS thanks for your response I appreciate it so much. I absolutely adore my son, he is truly deeply loved. I tell him a million times a day I love him. I cuddle him as much as he allows & spend basically 24/7 with him. I just feel like love isn’t enough to give him a happy, stable, content life. Like my limitations will stop him experiencing things. I’m due to start a 12 week education course tomorrow for 12 weeks for my eupd & can’t miss one session or I don’t be referred on for the individual & group counselling for the next 18 months. I wanted to go in clear minded all about my eupd. I was anxious enough it’s took me 20 years to get any kind of therapy from the NHS all they done was fill me with mental health drugs for 20 years. So now I know I’m going to go in all worried & stressed about the fibro that it’s going to affect my concentration etc. I rarely get time to get on the forum which to be fair to you all when I have been you have all been lovely & forthcoming to help & I appreciate it so much.
 
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