Trying...

[Fiz16]

Hi guys im new here ! My fibro took over 3 yrs to diagnose and that time alone was a total nightmare i was experiencing really bad cramps and was pushed onto a gynae team only now in jan to be told its ibs 😕so its fibro and ibs ..all this on top of rotator cuff in both my arms with agonising pain and osteoarthritis in my left knee developing and a lower back joint degeneration ...too much is happening to my body and my mind and lack of restorative sleep is mkin me lose who i am ..been off wrk on sick leave since jan ...so so confused and feel alone ...got a fantastic support netwrk but its like nothin matters ...any advice u wonderful people out ther ????

[bluebell99]

Hello Fiz16 and a warm welcome to our friendy fibro forum where you can get advice, support, help and understanding. Have you seen our Mother Site fmauk.org ?

Here you will find a wealth of information, including guides and links.

For some fibromites, diagnosis can take many years, it tends to be given when all the tests for other conditions come back clear.

Are you on any medication for your arthritis and/or fibro? If so ,it may need tweaking or changing. It is often difficult to find a medication which suits as we are all different and fibro symptoms can differ from person to person.

Amytriptyline is useful for restorative sleep and helps with pain, and personally it works for me. Going gluten free can help with the IBS as can reducing sugar and processed foods.

Hope this helps.

Kay

[Fiz16 in reply to bluebell99]

Thank u kay..i have also looked at ur sister site and a lady from there has advised me on benefits ...im going to see my gp soon as i feel the lack of sleep is making me feel so much worser 😕..i can sleep for hours but wake up with headaches and feeling so not fresh/restored...luckily my kids are older but my youngest is 9 and i feel like im letting him down so much ..i cnt drive him to skool so my friends are helping out ...my consultant reckons i may have cfs ( chronic fatigue syndrome) and im at the point where im thinking oh god when will this all go away? Living with the fibro is challenging as it is but having all the other issues is causing me to stres and despair ...

[Fiz16 in reply to bluebell99]

Thank u kay..i have also looked at ur sister site and a lady from there has advised me on benefits ...im going to see my gp soon as i feel the lack of sleep is making me feel so much worser 😕..i can sleep for hours but wake up with headaches and feeling so not fresh/restored...luckily my kids are older but my youngest is 9 and i feel like im letting him down so much ..i cnt drive him to skool so my friends are helping out ...my consultant reckons i may have cfs ( chronic fatigue syndrome) and im at the point where im thinking oh god when will this all go away? Living with the fibro is challenging as it is but having all the other issues is causing me to stres and despair 😕😕😕😧

[BlueMermaid3]

Hello Fiz

Welcome to our lovely support forum

In the scheme of things 3 years isn't a huge amount of time to get a diagnosis.

However, I am not saying that it is not frustrating getting there.

I have lived with Fibro & ME (plus other conditions) for 36 years and struggle massively with pain and fatigue.

The hard thing to understand is that lack of restorative sleep is why we have Fibro rather than it being a symptom.

If we were able to get restorative sleep every night we probably wouldn't have Fibro.

It is a matter of trial and error with medications and gentle stretching and finding other things that help us along the way.

I have recently bought some Magnesium spray from Holland & Barrett which I have found does take a slight edge off my pain.

Have you seen your GP to find out what medications you could try?

If you haven't already tried it, it may be a good idea to discuss Amitrypytline with your GP. It helps with pain, sleep and low mood.

Once again a very warm welcome to the forum. I hope you find it helpful talking to other people who know exactly how you feel.

Wishing you much peace

Lu x

Administrator

PS I would highly recommend that you look into locking your posts. If you click on the blue link below it explains everything you need to know:

healthunlocked.com/fibromya...

[Fiz16 in reply to BlueMermaid3]

Thank u hun ...the 1 conversation i had with my pain management mentor was trauma causing onset of fibro ..ive bn in 3 car accidents 😕...i initially started getting aches n pains over 5 yrs ago but they wernt that significant ...had i maybe seeked medical help then wud i b in this nightmare now...having other pain related underlying problems definetly does not help ...i will definetly try ur recommendation ...thank u xx

[BlueMermaid3 in reply to Fiz16]

Hi

My personal belief is that trauma/stress does cause Fibro and the more trauma you go through the worse your Fibro can be.

I was able to work for 34 years and raise two children, but after several severe traumas I am now unable to work.

I honestly don't think if you had sought help at that time it would have made any difference.

With Fibro there is nothing that you can do to make any difference. You just have to try all sorts of things to see if you can make your Fibro manageable.

I also find Deep Freeze sprays and gels helpful. You can buy those in Boots the Chemist. Some people prefer heat pads to the cooling sprays and gels.

My best advice would be to try different things until you find what works for you.

Lu xx

[Fiz16 in reply to BlueMermaid3]

Im on the waiting list for hydrotherapy have heard it works wonders ! I tried the gel and sprays in the very 1st stage of pain and my skin had a severe reaction ...morphine patch does help but i wont apply unles its a propa bad pain day as they can b addictive...im on the path of knowledge to seek what can work and watever i discover it will be passed onto u all so u may benefit also ..im so glad ive joined here as i was thinking there wasnt many sufferers of this life changing condition ...wishing u well xx

[BlueMermaid3 in reply to Fiz16]

We all give each other recommendations when we try something new.

The problem with Fibro is that what works for one, doesn't work for another.

Many thanks for your kind wishes.

Lu xx

(PS If you lock your post you are more likely to get more replies to your post) xx

[Fiz16 in reply to BlueMermaid3]

How do i do that?!

[BlueMermaid3 in reply to Fiz16]

If you look at the PS on my first reply to you I have given you a link to click on.

If you still need help, don't hesitate to give me a shout xx

[phlebo123]

Hi Fiz and welcome!

Sadly getting a diagnosis can be a bit of an anti-climax, we now know what we are dealing with, but unfortunately the healthcare team do not have a solution for us, there is NO magic pill we can take or an operation to put things right. And at this point in time, the condition is chronic. I like you was initially put under the gynaecologist, due to abdominal cramps (I was investigated for endometriosis) and after laparoscopy, scans, etc, was told IBS.

It is very disheartening to go through all these tests and they all appear negative. It is like hitting a brick wall time after time.

You also start to feel that everyone thinks you are making it all up!

Once we get the diagnosis, we seem to go through a sort of grieving process. We start to feel guilty, because we can no longer do all the things we used to do to help our family and friends. We start to feel isolated because nobody around us can see or understand our pain. Would it may be helpful for you to find out if there is a local support group you can attend (there are contact details on the fmauk.org website) or asking your doctor to refer you to a pain management clinic or group?

As regards your work, have you asked about working fewer hours? I have managed to return to work part time (12 hours per week).

As your children are older then maybe you can get them involved a bit more in household tasks, a kind of Rota. It is great that you have friends to help with school pickups and I am sure that your younger son does not feel like you are letting him down.

It has taken me at least 10years to come to terms and accept this condition, but I have found that gentle exercise , yoga and swimming and short walks help. The hardest part is learning to pace yourself and take regular breaks and accept help from others. The guilt is very difficult to overcome.

The website paintoolkit.org is also useful in learning how to manage and live with chronic pain.

Finally you are definitely not alone!! There are so many of us here who know the struggle you are going through. Take care xxx

[Fiz16 in reply to phlebo123]

Thank u for ur support and kind words ..i too had many tummy scans and even a laproscopy and it was only when after almost 2 yrs of having the procedure my problems were still ther and i was referred to a difreny gynae dr who was amazing and im now goin to see a gastro consultant shortly...ive also got rotator cuff in both my shoulder joints so im in alot of discomfort and pain from that too...ive just had steroid joint injections so im prayin they wrk a little at least ...i was very physically active but slowly its getin harder ..ive also got sacroilliac joint degeneration in my lower bk so if i walk it starts to cause hot flashing pain so i hv morphine patches for that ...im in the wars 😬😧😧...luckily the kids n hubby help so much as do friends but i jus wana b "normal" again ...i am hoping to go bk to wrk shortly fingers crossed ..wishing u health !

[TheAuthor]

Hi Fiz16

I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance.

I can see that you have been given some wonderful replies and advice so I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken