Diagnosed today and feeling unsure about it all

[ZoeSch]

Hiya just thought I would put a little message in to introduce myself. I am Zoe and I was diagnosed with fibromyalgia today, though it has been suspected for many years. While it is lovely finally knowing what is causing all of my symptoms, its also very difficult learning to accept that I am living with a life long condition which impacts my work and quality of life.

Just want to know how other people dealt with first getting diagnosed? I have had an acupuncture session today as well, and would like to know other people’s experiences with this. I am also looking into some guided meditation, has that worked for you?

 

[sunkacola]

Hello @ZoeSch , and welcome to the forum.

Everyone finds it hard at first. I mean, what's not hard about being told that you have something for which there is, as yet, no known cure? And knowing that this changes your life. You have a lot of company here, and we are people who are here to help others. We can tell you our experiences, make recommendations, and offer support.

Guided meditation helps some people, and not others, but anything at all that you find which helps you to relax and feel calm is usually helpful. It may or may not have any effect on your pain, but the more you can feel calm and relaxed mentally the better, because stress exacerbates the symptoms of fibromyalgia for everyone who has it.

Similarly, some people report acupressure or acupuncture as being helpful, and others say it didn't help them. Let us know how it is for you. And ask any questions you have, any time.

Experimentation is the key to finding out what works best for you. Here is a post that has some suggestions of things you might try.
I hope this forum is helpful to you.

S

Thread 'My advice for managing fibromyalgia (especially for newcomers)'

Jul 21, 2020

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a prescription and there are no guarantees. But I believe that if you can do these things, it will improve the quality of your life.

First thing to remember is that Fibro is not a death sentence and if you learn how to manage it, it will very possibly not always be as bad as it is now.

I was at...

• sunkacola
• Replies: 29
• Forum: General discussions about fibromyalgia

• 
• 

 

[ZoeSch]

Thank you so much for sharing this with me! That post is very nice to read. I am very intrigued by the diet and chemical section so I think that’s something I am going to look to improve first. One step at a time! Thanks so much for your support.

Hello @ZoeSch , and welcome to the forum.

Everyone finds it hard at first. I mean, what's not hard about being told that you have something for which there is, as yet, no known cure? And knowing that this changes your life. You have a lot of company here, and we are people who are here to help others. We can tell you our experiences, make recommendations, and offer support.

Guided meditation helps some people, and not others, but anything at all that you find which helps you to relax and feel calm is usually helpful. It may or may not have any effect on your pain, but the more you can feel calm and relaxed mentally the better, because stress exacerbates the symptoms of fibromyalgia for everyone who has it.

Similarly, some people report acupressure or acupuncture as being helpful, and others say it didn't help them. Let us know how it is for you. And ask any questions you have, any time.

Experimentation is the key to finding out what works best for you. Here is a post that has some suggestions of things you might try.
I hope this forum is helpful to you.

S

Thread 'My advice for managing fibromyalgia (especially for newcomers)'

Jul 21, 2020

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a prescription and there are no guarantees. But I believe that if you can do these things, it will improve the quality of your life.

First thing to remember is that Fibro is not a death sentence and if you learn how to manage it, it will very possibly not always be as bad as it is now.

I was at...

• sunkacola
• Replies: 29
• Forum: General discussions about fibromyalgia

• 
• 

 

[SBee]

Hello @ZoeSch I well remember the relief of a fibromyalgia diagnosis swiftly followed by an almost panicky feeling of but what do I actually do now?
I would find a good GP at your surgery. Not everyone goes down the medication route, some meds work well for some, or have no effect or just do nothing. But a good GP can advise you if you wish to try meds, and may also be able to direct you for physio, if that may help you, or a pain clinic if that may suit.

Your post has actually helped me! I used to do some chair yoga, but am unable to do so at the moment and followed up the yoga with some meditation. For some reason I stopped that too, and yet I can still do that, and I found it so beneficial. I shall return to meditation now, so thank you for reminding me.

Accepting a long term condition which impacts our lives can be hard. The fact that you recognise it is better to accept it rather than fight against it is encouraging. Take the time to be kind to yourself.

Do ask anything, whether it be for advice or support. Welcome.

 

[ZoeSch]

Hello @ZoeSch I well remember the relief of a fibromyalgia diagnosis swiftly followed by an almost panicky feeling of but what do I actually do now?
I would find a good GP at your surgery. Not everyone goes down the medication route, some meds work well for some, or have no effect or just do nothing. But a good GP can advise you if you wish to try meds, and may also be able to direct you for physio, if that may help you, or a pain clinic if that may suit.

Your post has actually helped me! I used to do some chair yoga, but am unable to do so at the moment and followed up the yoga with some meditation. For some reason I stopped that too, and yet I can still do that, and I found it so beneficial. I shall return to meditation now, so thank you for reminding me.

Accepting a long term condition which impacts our lives can be hard. The fact that you recognise it is better to accept it rather than fight against it is encouraging. Take the time to be kind to yourself.

Do ask anything, whether it be for advice or support. Welcome.

Thanks so much for this! It’s great to see that you are getting back into meditation as I am really unsure about starting it. Your message has given me motivation to try!!

 

[johnsalmon]

my doctor assumed that it may be fibro and put me on the right medicine - over time the medicine lost affect and she referred me to a rheumatologist and he put me on tabs that increased the immune system - ie if the pain went away then it was highly likely that it was rheumatic disease - with 2 increases of the tabs no change occurred and the pain did not go away so the Doctor continued me on the fibro tabs.

One day we may have a test for fibro!

 

[bbbarnard]

To: ZoeSch
Hi, welcome!
I’m sorry that you have Fibro, but I’m very glad you were diagnosed. Knowing what you should research and read about, and corresponding with others who are on the same path, will help you tremendously.

(I have insomnia, and it is now 5:37 am. I’ve been awake for 24 hours, so I need to make this brief today.)

My advice is to keep a journal regarding everything! Your symptoms, doctor visits, copies of test results, and everything that you try. Keep a record of each result. Write yourself notes about what works and what doesn’t. Invent a filing system for yourself. Whatever works for you. It will be important in the months and years to come that you know what you were advised to do, the medications you used, the treatments you received, and the results.

I regret that I did not keep all of my records, because now doctors want to know if I’ve taken this medication or had that treatment, the timeline, and the results.

Later, someone will ask you questions about your treatment, and you need to have answers.

That’s it, at least until I get some sleep!

Take care. Best wishes, BHB

 

[ZoeSch]

To: ZoeSch
Hi, welcome!
I’m sorry that you have Fibro, but I’m very glad you were diagnosed. Knowing what you should research and read about, and corresponding with others who are on the same path, will help you tremendously.

(I have insomnia, and it is now 5:37 am. I’ve been awake for 24 hours, so I need to make this brief today.)

My advice is to keep a journal regarding everything! Your symptoms, doctor visits, copies of test results, and everything that you try. Keep a record of each result. Write yourself notes about what works and what doesn’t. Invent a filing system for yourself. Whatever works for you. It will be important in the months and years to come that you know what you were advised to do, the medications you used, the treatments you received, and the results.

I regret that I did not keep all of my records, because now doctors want to know if I’ve taken this medication or had that treatment, the timeline, and the results.

Later, someone will ask you questions about your treatment, and you need to have answers.

That’s it, at least until I get some sleep!

Take care. Best wishes, BHB

Thats a fantastic idea and I am so pleased your brought that to my attention!
I will definitely begin collating all evidence and treatments for future reference. Thank you

 

[Borzov1982]

Fibromyalgia is a consequence of something, it often accompanies autoimmune diseases, diseases of the musculoskeletal system. But it can also be a consequence of stress, depression. What do you think could have triggered fibromyalgia

 

[ZoeSch]

Fibromyalgia is a consequence of something, it often accompanies autoimmune diseases, diseases of the musculoskeletal system. But it can also be a consequence of stress, depression. What do you think could have triggered fibromyalgia

I think stress as well as having covid!! It first flared up last year while I was extremely poorly with covid. I was also very stressed with work at the time

 

[sunkacola]

Many things can seem to be the triggers for fibromyalgia, and researchers are studying this. There are no actual conclusions about this in the scientific world at this point, but it certainly does seem that high stress is a factor, and stress can take many forms. Some people report that their fibromyalgia started after a serious accident or surgery, although of course correlation is not the same as causation and there's no way to know if the two things are genuinely connected or not. Many people with fibro report having had difficult or hard lives, especially childhoods.
But really nothing is known about what causes it. I will sure be interested if they ever manage to prove anything about the origins or causes of fibro.

 

[Borzov1982]

Я думаю наличие стресса, а также ковида!! Впервые это было сделано в прошлом году, когда мне было очень плохо из-за ковида. Я также был очень напряжен из-за работы в то время

Мой врач предположил, что это может быть фибромиома, и назначил мне правильное лекарство. Со временем лекарство перестало действовать, и она направила меня к ревматологу, который назначил мне таблетки, повышающие иммунитет. То есть, если боль исчезнет, то весьма вероятно, что это ревматическое заболевание. После двух приемов таблеток никаких изменений не произошло, и боль не прошла, поэтому врач продолжил давать мне фибромиома.

Однажды у нас, возможно, будет тест на фибромиому!

Please tell me, which pills did you take?

 

[Borzov1982]

Please tell me, have you been prescribed therapy to treat fibromyalgia?
According to you, you've been under a lot of stress. I note that the very condition of fibromyalgia is stressful, especially when you go to the doctors for a long time, and they shrug their hands. The phrase "incurable disease" usually ends up on the Internet. But many diseases are incurable and chronic. But these diseases can be brought into remission.Acupuncture is from the field of alternative medicine, it is not evidence-based. On the website, someone asked about the effectiveness of acupuncture, and I shared my experience, which had no effect. Personally, I often consider representatives of unproven medicine to be charlatans, whose main goal is your money.

 

[ckahern]

Hi Zoe, I was diagnosed with Fibromyalgia in 1994, when I was 29 and I still remember the day I was diagnosed. I lived in Lake Arrowhead, CA at the time so I had to go down the mountain to see a Rumatologist and I had to have a partial hysterectomy 6 months prior to this. This doctor in San Bernardino had written a paper on fibromyalgia and when I got home and read it I thought no way do I have this at my age. Now 30 some years later and making poor decisions on taking narcotics I wouldn't wish this on anyone!! Be careful not to let it still too much of your life away. I am truly sorry that you got the diagnosis of fibromyalgia. It sounds like you are dealing with in the most healthy way you can. I'm all for acupuncture and meditation!! Good luck sweetie, Cindy Ahern