newly diagnosed

[Pink_piglet]

Hi all, I was diagnosed around two days ago with fibromyalgia and hypermobility syndrome (eds), although I’ve been struggling for a while now, I’m struggling to take in the diagnosis, I was just wondering if anyone had any advice to give or suggestions on what to do next. Thanks in advance x

[Kittenmamm]

Oh I have the same problem. I just rest when my body tells me to. If I'm walking a lot I wrap my knees and ankles before I go out. It depends on what joint is bothering me. If it's my shoulder I can sometimes get relief with a shoulder strap. Eventually they pop back into place for me. My daughter has it bad in her knees. She goes to the hospital sometimes if her kneecap dislocated.

[Pink_piglet in reply to Kittenmamm]

Thankyou for your reply, I’ll definitely try wrapping my legs

[Divinesoul]

Hello! You are not alone. What helps me to cope is not to think of concepts or names. I just try to manage pain when arises and distract my mind. For the last 10 days I have been feeling dreadful. What I am discovering is that covid has exacerbated the condition, symptoms I never suddenly appeared!I have read that fibromyalgia has a high emotional component. Exploring your emotions, thoughts and believes help you (it does to me). I listen to Dr Joe Dispenza (you can watch his videos in YouTube, and if you like him may be try his meditations and read his books. He is amazing and he uses science to back up his results. He has many research studies with proper science backup. His community is also great and international. He offers online courses and retreats worldwide.

The important thing is to find that beautiful strength within you and to face whatever life throws at you with grace and courage. You are never alonel!

I could suggest the following points that zi am exploring for myself:

to find a good nutrition plan to support your health, may be a dietitian or nutritionist can help you. I get IBS bouts now and then and avoiding triggers is key when there is a flare up

A tailored excercise program (bike, walking etc) with some strengthning excercises too to make your muscles stronger

To practise of meditation/mindfulness, it does wonders. The cause of all issues is always the mind! Never believe thoughts that cause you to contract

Explore which vitamins support you best (vitamin D, vitamin C, B complex (for energy levels), magnesium etc. May be you can try to get a blood test from your GP and get a vitamin profile to see what you lack/need

Avoid at all costs alcohol

You can try acupuncture (it works for me) and physiotherapy (they can tell you which excercises are best)

Do a night time routine, for example a nice bath with aromatherapy (lavender oil added to the water) and then sleep straight away.

I hope this helps. What is important, is to never feel victimised about any condition and always talk to those who can understand you better, it will make you feel more supported.

All the best,

Mari

[Pink_piglet in reply to Divinesoul]

Thankyou so much I will definitely check out his YouTube and books, thankyou for taking the time to reply, I definitely feel less alone.

[Gigiruth in reply to Divinesoul]

Great post. Will look at YouTube

[Brandy2020 in reply to Divinesoul]

Really well said thankyou for this, just about to go to work and your post has lifted my spirits ☺️

[Yassytina FMA UK Volunteer]

Firstly welcome, I hope you find the forum helpful as we have many members from young too older with Fibro and infortuanelty other health conditions. It does take alittle while too process and I think too take one day at a time as every day may be different and hopefully some better than others (is what keeps us postive) , a very good post of advice from Mari , one I will will looking into myself , I’ve been on this forum probably 6 years now am I am always learning something new , we have a lot of wonderful members who offer advice , their experiences and kindness. Xx

[Pink_piglet in reply to Yassytina]

Thank you so much it’s definitely very helpful being a part of this group and reassuring to read lots of good advice. X

[Loobielu]

Sorry to hear this is happening to you and so young. I also have a 22 yr old daughter who I suspect has fibromyalgia and eds but she is extremely reluctant to seek a diagnosis. Says she's too tired and can't face it. It's extra sad because she deserves to not be living like this and despite how awful she feels she continues to hold down a full time job for the NHS. I'm interested in what the doctors have recommended to you if you wouldn't mind sharing? Thanks x

[Pink_piglet in reply to Loobielu]

Hi, firstly thanks for replying, I was very nervous about getting diagnosed and now being treated as I too am just very tired and I don’t want to let anyone down, she should be so proud of her self and never afraid to ask for help. As for the drs, the hospital are giving me hydrotherapy and changing my pain relief from co-codomol 30/500, to something stronger and more suited to the all round pain I’m in, they’re also changing the anti depressants I take but I can’t remember names unfortunately, as soon as I get them I’ll be sure to let you know. They’re going to put me in physio therapy for my whole body not just one specific area and then go from there. I’m sure when I hear more I’ll come and let you know as I’ll probably need some words of wisdom again. All the best Xx

[Loobielu in reply to Pink_piglet]

Hello, thank you so much for replying too 😊. You sound like you have a good Dr there who has offered you multiple lines of attack which I think is key with living with fibro. Hydrotherapy is supposed to be brilliant but difficult to get access to so excellent they have offered this and a combination of antidepressant and pain relief seems to be popular choice. I'm definitely interested in which medication they give you and wish you lots of luck in finding some relief. Be prepared it can take trying different meds before you find the one or combination you need and most don't cure just lessen the symptoms/pain. Lots of words of wisdom on here and support so keep reaching out. Fibro can make you feel quite lonely otherwise. All the best to you too 🤗 XX

[Pink_piglet in reply to Loobielu]

I’ll be sure to let you know as soon as possible on the medication front, i’m already on antidepressants so i’m hoping the change won’t effect my mental health too much, just keeping a positive attitude and keeping in mind it may take a few different tries to get it right xx

[Nipper11]

Hello Pink_piglet. Pleased you took the choice to come on this site and ask for support as there is loads which will give you ideas 💡 to research yourself. Look at getting to research your illness because there is so much data out there which will help you to understand your body and listen to the messages it is giving you. Get to know what helps you and how to live with your conditions because self help is worth a lot . Keep your mindset fresh in taking on challenging conditions which you may be able to overcome.

keep researching. Do exercises everyday stretching will help pain levels . A Ten machine can be helpful with pain and relax muscles. There so much more that can support you. Ask your GP for support in living with pain long term courses and pain management course these groups can give you so much in dealing with illnesses

Healthy minds are also a great support in helping in your lifestyle changes. You will meet others who will share there tips about living with Multiple conditions and how lonely life can be if you let it. Big hugs and good luck. Keep strong and kick back at this illness 🤒 and take control of it . Remember to be you and not let this illness take hold of you. Explain to others how you feel because at times you can't see what this illness does to your mind and body.

You can always get help here because all members understand your 😟 concerns. Take care x

[Pink_piglet in reply to Nipper11]

I found this by complete coincidence and have been overwhelmed with the words of support and advice so far. Im so glad I’ve found a community that’s so supportive and welcoming, I’m trying to do as much research as I can without overwhelming myself and getting upset. Thank you so much I’m definitely going to research those groups and try to keep a positive attitude. They really sound like something that’s going to help a lot. Thankyou so much for all your detailed advice I’m going to try my best to do everything you’ve suggested and see how it affects me.

I really do feel the support and I am already so grateful for it all. I hope you are well and take care, big hugs xx

[Nipper11 in reply to Pink_piglet]

You are very welcome. Just take slow steps. There's no hurry. Your not in any race and only take on things you feel you can. You are already so brave in dealing and listening to many who want to help. Take care Pink_piglet. Your going to be just fine. Xxx

[Pink_piglet in reply to Nipper11]

💝💝💝

[Lillylilac]

Hi Pink_pigletWelcome to the group. You will find oodles of advice, knowledge and support on this group. Also whenever you feel low or fed up, this is a great place to sound off.

My heart goes out to the young who gets this awful syndrome, it is so not fair. My daughter has the same as you plus CFS/ME. I do feel the most important thing is to pace yourself. Never go over what you can do even if it's just one more thing, don't do it. Rest.

My daughter has a weighted blanket which some find helpful others not. Hot water bottle can also help.

You really do have to try everything and don't be disheartened if it does not work for you. It is trial and error for everyone unfortunately.

I so hope you find some relief and comfort from the answers people have given.

Try and be positive (I know easier said than done) as it does help.

I hope you have a supportive family as that helps to.

Sending you comfy gentle hugs.

Love Lilly xx

[Pink_piglet in reply to Lillylilac]

Hi Lilly, thank you so much for your kind words I’m definitely feeling the support of this group already and so grateful for it.

Definitely trying to rest when I need it, I find myself falling asleep a few times a day for about 20 minutes, and I’m just listening to my body rather than fighting it now.

I’m definitely going to try the weighted blanket I think this would help greatly with the leg pain and restless leg syndrome I’m also suffering with, I’m trying a hot water bottle and trying to elevate my legs slightly when sleeping but like you say it’s trial and error so just go to keep going.

Thanks so much for the advice and support it really means a lot.

My family are very supportive and my partner has always gone above and beyond even before this so I’m truly so very grateful for him and his attitude towards this, he’s definitely my rock and calmed me down the most.

Sending you big hugs xx

[Divinesoul]

Hi All

You should look into the following treatments (very expensive) but may work for you:

RTMS

Repetitive transcranial magnetic stimulation (rTMS) is a brain stimulation technique that has been used for over 25 years to treat a number of different medical conditions, from fibromyalgia syndrome, musculoskeletal pain and widespread chronic pain.

Peripheral Magnetic Stimulation (MST)

Magnetic Shockwave Therapy (MST) is a painless, non-invasive treatment approach that initial research suggests may help a number of conditions in the body. These range from common complaints such as low back pain and neck/shoulder aches, all the way to neurological issues and even rehabilitation after stroke.

These treatments are the most recent ones in research and they are done privately.

You can Google them and see where you can get them. Dr Stephanie Barrett works with them.

However, ALL conditions are caused by our minds, no exception. It is not conscious but that is how it works. The medicine today still focus on the "effects" and not the root cause - the mind. There is growing evidence of this and backed up by science.

You can make your own research about it and explore it.

All the best!

[Pink_piglet in reply to Divinesoul]

thankyou for this advice i’m going to look into it!

[Deeb1764]

I think personally to call fibro a mind thing is out on the limb a bit since it’s known to be malfunctioning nervous system. The science shows it’s not all in the mind which was huge part of the issue and for many women tossed aside under the banner of it’s all in the mind. Thankfully better trained doctors have come to realise that a trigger whether emotional or injury can start fibro it also affects the nervous system causing so much pain and health issues.

[Pink_piglet in reply to Deeb1764]

Thankyou! yes this is very important i felt so defeated when a dr at my GP told me it was all in my head and sent me away but luckily i stuck to my own and kept the hospital appointments and advice from my own GP, although it’s hard, the diagnosis and the help i’m getting just after discovering this has been so helpful

[Deeb1764]

if ever told it’s in your head write a complaint and ask for a different doctor. I had rheumatoid arthritis diagnosed and 9 months later the pain was all over and I knew not the RA but was told it’s part of the process though facts stated otherwise. I paid for a private rheumatologist and he agreed my RA treatment plan spot on but started to touch me gently and u was going thro the roof in pain. Prof Karl was brilliant made me understand what I had and told me never be told it’s all in your mind it’s real it hurts top of head to your toes! 🥰

[Pink_piglet in reply to Deeb1764]

Thankyou so much for this it’s really made me feel heard🙌🏽

[Sal87]

Hi, I have just joined and found this post and so pleased I did. Amazing comments on here. I was told 2 weeks ago and have been on an emotional journey since. Relief to know it is not just in my head / A feeling of loss of self! As I was so active in my 20s and know that I will not just take pills and get back to what my head still believes as normal. Now I really need to get my mind to accept this and move forward.

I did not know how to approach this with family, friends and especially work. My job does not fell secure at the moment due to my company being bought out and I am not sure what the right move is. Between diagnosis and the work situation I have felt very confused and alone.

Thanks to you all for sharing your stories and guidance, I feel much better knowing there are people here who genuinly understand how odd and horrible this illness is. Its so misunderstood from what I have read. Maybe now is the time for me to stop feeling alone.

Love and best wished to you all.

[Pink_piglet in reply to Sal87]

Welcome, i too have gone through a rollercoaster of emotions and still trying to wrap my head around it but we’re all on here to support each other and keep each other company, we may not find the answers we’re looking for straight away but the advice and support is second to non. thankyou for sharing your journey with us and never forget you are not alone.

lots of love and support x