Fibromyalgia and other issues.

[Flowerbud94]

Hi, I'm only 25 and im suffering from Fibromylgia, however, I have several other conditions I am suffering from, gastritis, endometriosis and now this! I'm clueless on what to do, however I stopped taking Amitriptyline, I only took it twice and decided to not take it. Any advice on what I can do as the doctors dont do nothing but give medications. I have breakdowns as I'm on so much medication and it affects my stomach too. Please help with advices...

[sesorenotseht]

Hi, unfortunately everyone's symptoms are so different with it being a condition that can't medically still be 100%defined. What specialist day basically is the severity of what they believe is fibromyalgia. Hence why everyone is in different medication etc, I can only day I've now found some meds that agree with me mainly but I know did not with lots of others in here What I can say is good friendships on here have helped myself and I would recommend as you start your journey in trying to understand and cope with this awful condition please feel free to approach the forum

[Flyby7]

Hi we all have different medical conditions and on different medicines and we take them on doctors and specialist recommendations if I was you get back to yours doctors and explain what is going on but the tablets you are on you should take

[YASMINTINA FMA UK Volunteer]

Morning, I am sorry to read of your mixed comditions.my daughter has mild fibro and endometriosis so can relate to that, I would go back and explain to doctor this week , trial and error we call it, till you get something that works , I was put on some meds and came off as affected stomach, very hard as we are trying to find ways of helping ourselves and not adding to our problems, Stick with it and hope your doctor shows you some empathy and is helpful xxx

[Flowerbud94 in reply to YASMINTINA]

Thank you for your support. I have already been doctors several times hoping they'd do something. Sad to hear about your daughter, I hope she recovers soon

[Flowerbud94 in reply to YASMINTINA]

Hope you recover soon too

[YASMINTINA FMA UK Volunteer in reply to Flowerbud94]

Look after yourself , some lovely people here. Supportive and kind, xxxx

[Flowerbud94 in reply to YASMINTINA]

Yes that's true.. hard to find some

[JustDomUK]

Hey there

One thing that I find helps is to keep a log. Once I was keeping a log of things I found I could start to get a better understanding of what makes the days worse and what makes them better. Although I can’t related to endometriosis, I imagine that ( as with all pain I can’t understand ) it’s like a severe tooth ache pain and in particular in your case, it’s in your abdomen.

In keeping a log I found that I could show the doctors what was happening.

A good app is one called Chronic Pain Tracker. It helps to see if a medication is actually helping or not and can show your pain in a graphical way. The reports are really good too.

Some meds require time before they kick in, others can work straight away.

It’s also important to remember that you are not alone.

I am a believer in God and he helps strengthen me because I can’t do it alone. I appreciate that not everyone believes in God.

I find it also helps to focus outward on others and not on myself. If I focus too much on myself I start to get anxious and that doesn’t help me. Focusing outward stops me looking at what I’ve lost and more on what I’m gaining.

I hope this helps you.

Dom

[Flowerbud94 in reply to JustDomUK]

I've had someone give me advice on making a tracker on what I eat and what pains I have.

I guess now is the time to do so. Because it's very difficult and at the time of speaking to the doctors it's hard to recall what happened.

Yes we can pray and ask God for strength and patience towards our health.

Thank you for your support.

[wallflower_fairy]

Hi Flowerbud,

You're not alone. I'm nearly 26 and I've been suffering for a decade with this. I was diagnosed at the end of 2010.

It's hard to know what to advise as there's no "one size fits all" way of tackling this. People have different experiences of the illness and comorbidities. I don't want to just repeat what you'll already know.

I don't know how long you've had your conditions for, but as time has gone on, I've found I've got to know my body better and what triggers different symptoms. Keeping a diary or tracker might accelerate this.

It might be a case figuring out what are the most common symptoms for you and looking up ways of easing them. Then if you type a symptom into the search bar of this community you'll find lots of posts of people asking about specifically that symptom and advice tailored to that.

I'll leave it here then as I'm tired and don't want to overload you.

Hopefully other people will be able to give good feedback.

Xx

[Flowerbud94 in reply to wallflower_fairy]

That's true.. my stomach condition ongoing since the age of 10... it's been 15years, no diagnosis!

Endometriosis was diagnosed 2 years ago, and I have varicose veins had surgery in 2016 for both legs. Now they say its fibromyalgia.

No idea what's going on, I've been experiencing all pregnancy symptoms as well however I'm yet not conceiving and hoping I do!

Keep me in your prayers.

Thank you for your support xxx

[wallflower_fairy in reply to Flowerbud94]

I will do Flowerbud ❤

I also really hope you get an answer soon.

Given the endometriosis and the symptoms you've been getting, I was wondering if you'd been referred to a Gynaecologist? If you haven't been referred to one it might be worth enquiring. They may be able to help you to find out what's going on.

When it comes to a diagnosis of Fibromyalgia, doctors also have to be thorough in ruling out any other possible causes of the symptoms and obviously by taking your medical history into account.

If they've given you a diagnosis of Fibromyalgia without investigating it properly then that's incompetent and I would really advise getting a second opinion. A good GP or Rheumatologist would be able to correctly diagnosis Fibromyalgia.

Xx

[Flowerbud94 in reply to wallflower_fairy]

Yes I had surgery for endometriosis but diagnosis of fibromyalgia was guessed 🤷🏻‍♀️😔

[wallflower_fairy in reply to Flowerbud94]

I'm sorry they diagnosed you with Fibromyalgia like that.

I really would ask for a second opinion with a new doctor, as they shouldn't do that. It should only be diagnosed when every other possible cause is ruled out. Xx

[Flowerbud94 in reply to wallflower_fairy]

True

[Dizzytwo]

Hi there, has far has im aware GP's can now make a diagnoses of fibro. The one thing I know. No matter who makes the diagnosis the treatment will be the same xx

[Flowerbud94 in reply to Dizzytwo]

They said there is no way to diagnose it

[Midori in reply to Flowerbud94]

No positive ways, true, it is a Diagnosis of exclusion. Once they have ruled out everything else, then they will call it Fibro.

[Dizzysmile]

Hi, I’m in the similar situation but a lot older, I have fibromyalgia, heart condition, rare autoimmune disease and loads more complications.

I am also on a lot of medication approx 23 different medications, I’m trying to get mine reviewed at the moment! Had to stop with lockdown!

I do find that Amitriptyline has helped with my fibromyalgia! But it doesn’t start working the minute you take it. It takes about 3-4 weeks before you get any benefit from it.

I would recommend you approach your GP or consultant to review your medications as they can reduce the ones that you no longer need. I know the feeling it seems like one on top of the other.

Do take care and I hope this helps you a little 😊

Blessings x

[Flowerbud94 in reply to Dizzysmile]

That's really sad to hear..

I hope all goes well for you too..

Amytriptyline worked for me straight away but I never wanted to take a form of medication from an anti depressant group.

Yes hopefully I will.

Thank you for your support

[jumpingfrogs99]

look into LDN, this helps with lots of conditions , yr have to pay for private prescriptions and for the LDN ,but it works great for a lot of people, esp with stomach issues , its a very safe medication i am very sensitive to meds i took it with no problems other than some nice dreams , the only reason i stopped was because i wanted to try CBD and i couldn't afford the both. look for the vid of doctor chris steel on you tube talking about it , it is esp good for poor immunity and stomach issues , you have to be free from coiden before you start it ,and have a consultation via phone from a prescribing doctor

[Flowerbud94 in reply to jumpingfrogs99]

Thank you for the advice

[bookish]

There are believed to be connections between fibro and endometriosis. One of the genetic variations (SNPs) possibly linked to fibro is COMT, which affects the way you process neurotransmitters and oestrogen. Slow COMT enzyme function puts pressure on MTHFR which also affects oestrogen. It is of course possible to test genetically , but more use to see if you actually have slow oestrogen metabolism. (Just having a genetic variation means very little.) Vit C and natural Vit E help to balance the oestrogen (like progesterone), as does magnesium, which supports COMT function and helps your liver to excrete oestrogen. Try a magnesium oil spray on the skin, or flakes in a bath or footbath. Micki Rose's site may be helpful to you purehealthclinic.co.uk/2012.... The other thing worth mentioning is that about half of fibro diagnoses are believed to be due to Small Fibre Neuropathy and nerve fibres are aggravated by histamine release from mast cells, which is also strongly affected by oestrogen. Might be worth looking at Dr Oaklander on YouTube (Small Fibres, Big Pain - Radcliffe). Keeping a pain diary to see how all of your various conditions vary with your monthly cycle might not be a bad idea. Best wishes

[Flowerbud94 in reply to bookish]

Thank you for the advice.

[Hidden]

bless you I have fibromyalgia and gastritis endometriosis plus other conditions so I know how hard it is struggling with I’ll health. I know it’s so hard I really do and your so young you really are and it’s no life to always be I’ll but there are ways to get better. Get your medical records all of them so you have a clear understanding of your health then keep a food and symptoms diary it’s really helped me. You will probably be very sensitive to medication and food if not that’s great as it’s a real blessing. If your food sensitive then try a different diet as it will ease your symptoms. I have tried it all getting well try going gluten free drinking only mineral water eating only fresh natural food it worked wonders for my joint pain. Get plenty of fresh air and sunshine and also get a medication review. Go onto you tube and look at their posts on fibromyalgia and get as much information as you can I find it helps when dealing with drs. Most drs don’t even believe in fibromyalgia if you get a good dr then it’s a great blessing. Find out what helps you. I try baths of Dead Sea salts or magnesium salts. Drinking 2/3 litre of natural water as the tap water makes my fibromyalgia much worse. If you could maybe do some juicing and smoothies and see if your symptoms calm down. Keep on this site as people can be so supportive and they have lots of experience and a wealth of knowledge which is invaluable. I hope you have family and friends who can be supportive and understanding who can listen to you on a bad day. Find if anyone can come to help you with housework and shopping as you need rest lots of rest so try not to get overly tired. Have a lovely day. Take care. J

[Flowerbud94 in reply to Hidden]

I will try and do as much as I can, and look into what you've advised. Thank you very much J

[E3178]

Hi, I have also found that different foods make a big effect on the amount of pain. I recommend writing a food diary and look back to previous days to see what might have been a trigger when the pain is bad. Do lots of research on how foods can affect your body. Good luck

[Flowerbud94 in reply to E3178]

Yes that's true, I get a contact nagging about what I eat Haha. But thank you for your advice.

[Midori]

It's a case of becoming an Expert Patient, and knowing more about your condition than your GP. Research is the key.

They throw medication at us hoping something will help, but often, the interactions between the medications will actually make us feel worse. Have a word with your Pharmacist about the meds.

I hate Amitriptylline, but I will take Nortriptylline sometimes. I won't take anything long term as I find I am better taking less medication, and I am definitely Not depressed! Currently, I take only Ibuprofen and a CoDydramol if I'm absolutely desperate.

My main problem nowadays is the stiffness, and that in itself is painful, but as I move around it eases. I also have a messed up knee, which will teach me not to be so helpful! Every good deed brings it's own punishment!

I have addressed my gut issues with limiting gluten, as I found myself with sensitivities to wheat, barley, rye and oats. I find I can manage Brioche, probably because of the butter in the mix, and also sourdough.

Hope this might help a little, we Fibromites have to help ourselves, unfortunately.

Cheers, Midori

[Flowerbud94 in reply to Midori]

That's sad to hear, hope you get well soon. Good luck and thank you for your advice

[Flowerbud94]

Wow.. I'm so amazed to read this, there is alot of positivity. Amazing! Good luck DarrellW, wish you the best!!!

[Flowerbud94]

Wow... haha it's okay, good advice though. Thank you very much