Daughter just diagnosed

[Lucida951]

Goodmorning

After 3 and a half years of pain my 19 year old was diagnosed with fibromyalgia she is also being tested for pots

Are there many teenagers on here ?

Thanks for reading

[BlueMermaid3]

Hello Lucida951

Welcome to the forum

I am sorry to hear that your daughter has been diagnosed with Fibromyalgia.

Do you think that she would join us here on the forum?

I was diagnosed when I was 20 in 1980 and have lived with Fibro & ME for 36 years.

We do have some younger members on the forum.

However, I do think it would be good for your daughter to join us here as there are many of us who have lived with Fibro for many years and can give your daughter help and advice.

Our members range from about 18 years old up to people in their 70's and 80's.

Some members are literally just diagnosed, whereas others have had Fibro for many years.

My personal advice to your daughter would be to learn as much as she can about how her Fibro affects her. If you take a look at our mother site you will find lots of information about Fibro on there fmauk.org

Once again a very warm welcome to you both

Wishing your daughter a peaceful day.

Lu x

Administrator

[Lucida951 in reply to BlueMermaid3]

Thankyou very much for your reply and warm welcone i shall definatley encourage her to join so she can get support from this lovely community x

[BlueMermaid3 in reply to Lucida951]

Hi again

Would you mind me asking how fast your daughter's heart rate goes up to?

I am only asking as I had a problem with tachycardia for years, until I finally had an operation where one of the "leads" (can't think of the medical term!) to my heart was lasered and I haven't had the problem since.

I just wish I could remember what the name of the issue I had was. Sorry.

My heart rate was going over 200 bpm.

Lu xx

[Lucida951 in reply to BlueMermaid3]

Yes her heart rate has gone up to 200

Most of the time her heartrate over 100 very rarely under x

[BlueMermaid3 in reply to Lucida951]

Has your daughter been referred to a cardiologist? It is very dangerous for a heartbeat to stay at 200bpm for any length of time as it can lead to a stroke.

I'm not trying to scare you. I just want you to know so that you can ring 999 if her heart rate is staying too high for too long.

I passed out a few times as well.

This started happening when I was around 19 years old.

After my heart op the consultant explained to me what they'd done during the op.

I feel so stupid that I can't remember the name of what I had!

The consultant said that it only affected women (I think it was something like 30 per cent of women).

Because I'm now 56 the exact details are a big vague but I remember the op as I had to have it done whilst I was awake.

Lu Xx

[Lucida951 in reply to BlueMermaid3]

Her heart is not at 200 often

Yes shes seen a cardio dr and has now been reffered on to a cardiologist that specializes in pots xx

[BlueMermaid3 in reply to Lucida951]

The way my consultant explained it to me after my op, was that some women have an extra blood vessel leading to their hearts that in layman's terms is a dead end.

The blood sometimes tries to go down the dead end, realises that it can't and tries to get back into the normal blood stream again.

This is what starts the tachycardia attack off.

After the extra blood vessel has been burnt off there is no way that the attacks I was having could happen again.

She said that I may occasionally get the feeling that an attack was going to start again, but because the extra vessel had been destroyed I wouldn't go into a full attack again.

When I am super stressed I do get the feeling an attack is going to start, but I have never had one again since my op.

I just thought you may find that interesting.

Good luck with your daughter's referral.

Get her to come and join us. We would love to have her

Lu xxx

[Lucida951 in reply to BlueMermaid3]

Wow thats really interesting thanks for sharing that you have been very helpful today and yes i will def encourage my daughter to join this friendly group x

[BlueMermaid3 in reply to Lucida951]

You're very welcome 😊 I hope it all made sense!

Look forward to chatting with you again xx

[suzey26j]

Hi ,hope you don't mind me saying what pots. X

[Lucida951 in reply to suzey26j]

Hi suzey26j

No dont mind u asking at all 😊

Im still learning about it myself the right mame for it is postural tachycardia syndrome

All i know is with my daughter she has a very fast heartrate at times also her bloodpressure is high at times but she also passes out because of it esp when she has been stood up too long or goes from sitting to standing x

[suzey26j in reply to Lucida951]

I have very fast heart beat ,spent 2 weeks in hospital a few months ago , there is a proseger I can have in and out same day ,still thinking about it good luck for your daughter X

[Trikki]

Hello Lucinda051 ......So sorry to read about your daughters diagnosis...but if you can tell her how welcome she would be to join us here she will gather useful info that has been garnered over many years by those who have had fibro for years.....there are younger members on here so I hope you get a response. It will be good to talk to her or yourself again soon x

[Lucida951 in reply to Trikki]

Thankyou very much for a lovely welcome as you can imagine we have not known which way to turn over the past few years she was tested for so much bless her so the welcome is much appriciated x

[Janet28]

Hi Lucida951 Welcome to our wonderful Fibro forum, I'm sure your daughter would love it and find it invaluable chatting to others who are going through the same experiences, at different stages of their lives with fibromyalgia. As our lovely BlueMermaid3 has given you lots of info I can't add to, I just wanted to say hi & it would be great to see your daughter on the forum..I'm sorry she has had this diagnosis and do truely my hope she hasn't got Pots As well. I do wish her good luck and do pls let us know.

Peace, luv n light

Jan xx

[lynn17]

I was diagnosed in my early twenties.xx

[Shibby89]

Hi welcome Lucida951 I have had fibromyalgia since I was 18 but only got diagnosed 3weeks ago I have lived 10 years with this. If ur daughter is feelin self conscious please explain she is more then welcome as everyone on here are so great, supportive and caring from shib

[erinabrow2]

I'm 16 and just diagnosed

[Lucida951 in reply to erinabrow2]

Thanks for yr reply x

[Newtali]

My daughter is 19, diagnosed 2 years ago. She is not on the forum and in some ways I quite like having somewhere I can express how it affects me as her mother without this upsetting her.

What meds have been tried? I wonder if the Pots will limit what meds they can try. My daughter does not have Pots (at least they haven't looked into this) but she finds most meds give her palpitations so most management is natural. She finds heat helpful and uses heat pads, heat wraps and Linnex heat stick (available on internet). I also give her a massage every night which helps to reduce pain and reduce tight muscles. Only trouble is she is now completely dependent on the heat pads and my massages and without this she gets a lot worse.

A lot of people find vit D high dose and magnesium help but these don't seem to have helped her. Everyone is different and it is a matter of finding what helps her.

She also has osteopath once a week which helps but is very expensive!

She spends most of her time in bed as any activity makes her much worse. She has done her A levels over 3 years as she has missed so much school and has done most of her study at home. She is planning to do open university as she would not cope with going to university.

Is your daughter working or at university?

I hope she finds some relief. As a fellow mum I know how hard it is to see your daughter suffer and not be able to help her.

[Rosary24121997]

Hi!!! well i am 20 yrs old so technically not a teenager... I just got diagnosed with FM a month ago after suffering from chronic pain for almost 5 years now....

So sorry to hear about your daughter`s diagnosis...

Actually when i was diagnosed I was overwhelmed and well when i searched about the disease it overwhelmed me a lot more... I dont know about others but over the years my pain has worsened... What overwhelms me is the fact that there are patient testimonials claiming that it is difficult for them to work and carry out normal activities..

Currently I studying medicine and i am already in my 2nd year... When I read about what others experience in this condition, there is this constant fear that I might never be able to practice as a doctor..

But we get only one life right? So I am determined to make most of it and i absolutely will not let FM in my way of enjoying and doing what i want to do with my life...

All I can say to you is its a great thing that you actually understand your daughter is gonna face a lot and you are ready to help because people around us simply dont understand that the pain we face is not exactly how their body perceives pain stimuli which leads to many insensitive comments and remarks...

Good luck to you and your daughter, and i wish her best of luck on coping with FM

P.S.: Forgive me for the long rant.... It actually feels good to know that there are people who have been through this