Just to say hi : Hi I’m Vicky and was... - Fibromyalgia Acti...

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Just to say hi

vicky1981 profile image
26 Replies

Hi I’m Vicky and was diagnosed yesterday. I’d had a feeling the doctor would say those words as so many people have been saying for months that my symptoms were that of fibro or Cfs.

I didn’t quite want to believe it and guess I was hopeful in a way that it would be something treatable.

I won’t be defeated and will try my very best to deal with this head on and take each day.

The biggest lesson I guess will be learning to listen to my body instead of fighting against the pain and fatigue. I can’t do what I used to do in the way of physical activity and working hours etc. I’m very good at being a glass half empty person but I’m determined to try to focus on what I can do rather than what I can’t.

Any advice, info would be very much appreciated. I’m so grateful to have somewhere that I can speak to others who know how I feel.

Best wishes

Vix

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vicky1981 profile image
vicky1981
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26 Replies
Bluenordic profile image
Bluenordic

Hi Vicky1981, nice to make your acquaintance. I was diagnosed just over a year and a half ago , but like many others have had Fibro for many years more. Do you still work full time ? I am just managing to do so by the skin of my teeth but not sure there is a realistic alternative at the moment. But this morning at 4.30 I got back into my hot tub for the first time this year. Bliss, bliss and more bliss. No pain when I am in it. So that's my tip for the day. Dr's advice was to stay in it for at least an hour at 37 degrees. The relief is instant. It doesn't last afterwards but some relief is better than none.

vicky1981 profile image
vicky1981 in reply to Bluenordic

Hello thank you so much for your reply.

No I only work 20 hrs a week now. I was devastated as I completed an access course and got accepted at uni a couple of years back. I had a massive cyst on my ovary which they thought was cancerous ( fortunately it wasn’t) however after that and many more issues down below I was advised that a hysterectomy may help my pain which I had in October last year.

It’s always been my dream to become a nurse and although I’m not completely giving up the idea I’m coming to realise it’s highly unlikely now. 13 hour shifts at the hospital just completely wiped me out.

My fibro symptoms have definitely worsened since surgery last year but in all honesty they’ve been there for years now. I just never knew what it was and at times I even thought... is it in my head?? Am I going crazy?

Wow a hot tub sounds like heaven to me 😊

Do enjoy the sunshine and happy Easter 🐣 xx

Bluenordic profile image
Bluenordic in reply to vicky1981

Morning Vicky, it's a shame isn't it to have to re think your future. I always promised my husband that he would never have to go into a home, he is a bit older than me, and that I would always to the best of my ability look after him at home but now he is having to do more and more for me. Its devastating me that I probably wont be able to keep my promise to him. This condition is such a thief.

The hot tub I have is not expensive at all. I got it from Aldi but they also sell them in B &Q. It is an inflated one that I have sitting on some none slip decking. So maybe a bit of heaven is reachable for you as well. Hope you have a peaceful Easter.

vicky1981 profile image
vicky1981 in reply to Bluenordic

Ahhh your husband sounds like a really understanding man. I’m sure he wouldn’t want it any other way, however I completely understand why you’d beat yourself up. I’m the same. I just love to do things for others especially my two girls and now my 4 month old grandson. They are just my world... and my little doggie too. He ensures that I exercise everyday and gives me the incentive I need to get walking and moving.

I will definitely look into the hot tub. Sounds bliss.

Take care xx😊

Bpath profile image
Bpath in reply to vicky1981

I have had great lasting relief from ice baths. Start with cool pleasant temperature. Increase the "coldness" as you go. 3mins in, 3mins out. I use a big tub that i fill with tap water, add sea salt, epsom salt and keep adding ice every few mins. See your pain melt away, even brain fog melts away... Good luck.

Echoblue profile image
Echoblue

Hi Vicky, the best advice is to get tuned in to your body. Get to know when you can do stuff, but more importantly when you have to give yourself quality rest ....... though that is easier said than done if your sleep is affected like many are! I was diagnosed around 10 years ago and I happily catnap if required which means I can often do things on an afternoon that historically I couldn’t when I would try and fight it!

Be gentle with yourself as there will be a period of adjustment after your diagnosis. Finding what works for you and your specific symptoms will be key.

As a couple of starters (though do note this is what works for me and is only my opinion, so may not work for others) I had excellent support from a holistic chiropractor and a very supportive GP. Chiropractor suggested I took Turmeric capsules which I have done so ever since. This made a significant improvement to my symptoms. Other things I have found useful are physiotherapy if you can get it. This has kept my mobility and assisted with easing the horrendously rock hard muscles particularly across my back, neck and shoulders. Acupuncture that physio does has also been invaluable for me.

I do as much walking as I am able. The amount varies day by day. Whatever form of exercise you can do or enjoy will help.

Good luck and I hope you find something that works for you. X

vicky1981 profile image
vicky1981 in reply to Echoblue

Hello thanks so much for your reply.

Yes over the last year or so I’ve started to accept that if I feel shattered then to take a nap (which at first I completely beat myself up over). I felt like people would judge and think I’m lazy.

I’m typically someone who likes to keep busy and will find things to do. To do nothing is very frustrating for me.

I’ve had a few melt downs over the last few days but I’ve had a word with myself. It is just about finding what works. I’ve been told that massage and acupuncture is fab but unfortunately on the expensive side too for me at the moment, but I will bare it in mind for sure.

Take good care and happy Easter 🐣 xx

Echoblue profile image
Echoblue in reply to vicky1981

I remember that feeling so well - I like to be in control of everything and I found adjusting to not being in control of what was happening to my body was so hard and frustrating, but negativity can be so debilitating.

Some battles are worth fighting .... getting the diagnosis is a big step forward, but so are the right meds for you to get over the flare up. You can then be back in control to have the level of meds that work for you. Do remember that all meds have side effects and I found my doc just adding in more and more meds to counteract side effects which then brought their own until it reached crazy levels of pages of repeat prescriptions until I asked for a review and we looked at what could be stripped away safely. Things like that mentally help as you can still feel an element of control!

I wish you well and hope you find your path. Keep positive when you can and most importantly, be gentle with yourself..... that isn’t weak or giving in...... that is your strength 😉.

vicky1981 profile image
vicky1981 in reply to Echoblue

Thank you so much again for your words of support and advice.

Yes there was a time when I was taking ridiculous amounts of tramadol. I became completely and utterly addicted to them.

I was so utterly ashamed of myself and completely cut down, so now I take one in the morning and one at night, rather than two three times a day.

I have also taken Gabapentin for a number of years now. I’ve increased the number I take which was advised by my consultant at the pelvic pain clinic.

The only others I take are vitamin D, anti depressants which I’ve been on for years and years and now HRT.

I’m sure in time I will find different methods of relief and I’d definitely prefer it not to be in tablet form.

I’m just feeling very up and down at the moment. Keep bursting into tears one minute and laughing the next..

Thank you again and take good care xx😊

Echoblue profile image
Echoblue in reply to vicky1981

You have absolutely nothing to feel ashamed about Vicky - none of us chose to have Fibromyalgia!

Also don’t reject painkillers if you are having a flare up.... your body is shouting that you need to rest and help.

It is quite a mind shift to undertake to adjust to not seeing taking painkillers as a weakness as we are historically taught we can fight through everything! You need to rip up that rule book!

It is a type of grieving you are going through - grief for the old life, but this is a new chapter, even though you haven’t chosen this book and you have to work out the rules that work for your body.

Be gentle with yourself while you adjust and find a way through this flare up. Keep moving when you can and rest when you need.

Virtual hugs 🤗

Lovetoboat profile image
Lovetoboat

Hi Vicky... I have felt for years that I have had fibromyalgia as I have dealt with many clients having fibromyalgia. A few key things to keep in mind are...listen to your body. Use ice/ hot packs. I have packs in the freezer all the time. If you are having lots of nerve pain...try compression clothing. Sigvaris has leggings that I love ...I wear them with long tops. The compression reAlly helps... you can also get body suits...like spanks...when I have it in my hands..you can buy gloves on line for arthritis...fingertips are free so you can still type...and do your daily activities.

Try to find things that calm you. I find when I am doing a hobby...I focus on that more and not the pain.

I am currently doing injections every week for 8 weeks... then once a month. It really helps.

I also have PTSD and osteoarthritis in my neck and back.

My shower and hot tub is the best.

Wishing you all the best...don’t give up.

I look at it like this... I am going to be in pain, that I am learning to cope with. It is getting better. I don’t have cancer...so I am not facing a possibility of dying from it.

I just need to change my lifestyle.

💐

vicky1981 profile image
vicky1981 in reply to Lovetoboat

Hiya thanks so much for your words of support.

Yes I’ve definitely been relieved from hot water bottles, cold sprays and baths etc.

The worst thing for me is wanting to do something but just not having an ounce of anything in me to do it. Feeling energy-less is very frustrating. I can fight through the pain ( most of the time) but that complete and utter fatigue and just feeling like I’m wading through cement is the worst for me.

Sleepless nights and waking up feeling like I have flu isn’t too pleasant either. It takes everything I have to get out of bed in the morning 😩😩

What injections are you having??

Blood tests showed I have an extremely low vitamin D level so put on 6 months worth of tabs for that. I’m hoping it may help a little.

Absolutely you’re completely right. It is about changing your lifestyle. I feel guilty at times for feeling sorry for myself as my dear mum has MS and has battled for nearly 30 years . She’s now stuck in a wheelchair and she’s worsening by the day. He resilience and determination to battle gives me the inspiration I need.

Take good care and Happy Easter 🐣 xx

Lovetoboat profile image
Lovetoboat in reply to vicky1981

Hi Vicky,

I hope that you are feeling better. I am taking Marcaine injections. The first time, I was given 16 injections....now I get more than 20 injections each time. This is foe 8 weeks....then, once a month. They help.

I am just finding that I am coping with my diagnosis more than my family.

For 15 years I worked with clients that had MS and many other diseases. We are lucky we don’t have that. However, some of our pain is very similiar.

This weather has made it very difficult on me. I have been taking more gabapentin and more ice packs. Last night I was so stiff at 4 am I got up took pain meds...watched tv for 4 hours with hots packs.

It makes it very difficult on our family. On times ...they too. May get tired of our pain as it does change their lives too.

So, I am trying to put on my makeup...so, I look better on the outside. Force myself to do things...even tho’ I am hurting.

I look forward to my times alone. It gives me my downtime.

Keep your chin up ....we can do this.

Kindest regards,

Michele💐

vicky1981 profile image
vicky1981 in reply to Lovetoboat

Absolutely I’m exactly the same.

I cannot begin to think about starting my day or leaving the house without putting on my make up, regardless of how drained, pained or frustrated I may feel. It somehow makes me feel ‘ normal’... I’ve always done it so why change now?

Sleeping is a huge issue for me at the moment.. I can lay on one side for no more than around half hour before I stiffen up and feel pains or pins and needles. Sometimes I just can’t get comfortable at all and move my legs a lot.

This of course is frustrating for my partner as he senses me tossing and turning all night. He says it doesn’t matter but it does to me. I feel so guilty so sometimes take my self to the sofa.

My mum is a constant reminder that things could be worse. My father is her full time carer and she suffers the indignity ( her words) of being washed and dressed/ put to bed etc by her husband of 40 years and yet she still smiles, tries her best and is always there for the family. She is just so strong and inspirational to me.

I’ve spent a lot of this weekend in tears over being told I have fibro, which makes me feel so incredibly guilty knowing that she has one of the most debilitating, nasty, cruel illnesses going.

I too like nothing more than snuggling up in my fluffy blanket, pjs on watching a film with a huge bag of Maltesers 😋

You too take good care and thank you again 😊

AllthatGlitters profile image
AllthatGlitters

Hi Vix, hope you are feeling well today. I suffered with fibromyalgia symptoms for many years, well over 15 years and could never understand why I was always aching or feeling sore or tearful because I was driving the 60 mile commute to work on day 5 and felt like I couldn’t cope anymore. It’s great you are thinking about what you can do instead of what you are not able to do anymore. I notice if I say go for a days shopping then the next day I feel really sore and tired, lethargic and can’t be bothered to do anything apart from rest. Listen to your body, I find heat helps me and a light massage too. Some days are better than others aren’t they?

One thing I have noticed from other people / employers is when they know you have got fibromyalgia but they think you are putting it on since you may look well because you have makeup on or hair done. People need to be educated better on this illness so they can support suffers x

vicky1981 profile image
vicky1981 in reply to AllthatGlitters

Hello and thanks so much for your reply.

Wow 60 mile commute to work must of been exhausting for you 😩

I know what you mean though. 13 hour shifts at the hospital last year just killed me. A shift one day completely wiped me out the next.

Heat definitely helps me too. I do like the cold sprays too even if it is just seconds of relief.

Yes I completely agree with you. There is not enough out there on fibro and like you say it feels like people think you’re exaggerating or putting it on.. if only!!

I think the times I find it hardest is when I so want to do something but I just physically cannot drum up an ounce of energy.

Take care and happy Easter 🐣 xx

grandmama16 profile image
grandmama16

Hi Vicky....I'm a little older than you are, probably 50 years as I'm 75. I was diagnosed at least 20 years ago and have been so happy that I have a Dr. who understands the variety of pain and symptoms with Fibro. Mine have been all over the place. Started with hands and feet. Then right shoulder so bad that I couldn't lift grand daughter who was 2 at the time....she has 2 little boys now. I took care of grandkids 5 days a week....up to 4 with one daughter, then 2 with another. Later 3 girls with older daughter before and after she died of cancer in 2006. We moved to neighboring state for over 2 years for that. I'm so greatful that pharm transferred all my meds. I take Cymbalta for depression, anxiety and Fibro. and have for years. Norco for pain, others for blood pressure, sleep, and sleepiness/fatigue during the day but usually just 1/2 tab of that one in AM. I try to take the least of those that I can get away with. Then there are reactions to meds. Can't win. Have numbness and tingling, itching in hands...also itching in feet and ankles. Just a warning. I think I've lost track of what started when. My advice....keep a diary of your symptoms and meds., and reactions, not everyday but when you notice a change. Onset of diabetes during this probably due to cymbalta. It's not bad tho. Fatigue/pain is hardest to deal with because it makes me feel so useless. I do not exercise even tho grand daughter is a Fitness trainer, college degree, also in nuitrition. When hubby was dx with Parkinsons around 2013 we went to an exercise class for that but since then it has gotten too pricey so we have both stopped. Would like to try the Rock Steady boxing or other classes for PD but they are too far away. I walk the dog but that's about it. Just shopping totally wipes me out. Housework....ha ha ha...as needed. I wish you all the best on this journey. M.A. in U.S.A. If I've answered you already, sorry. I tend to repeat myself.

vicky1981 profile image
vicky1981 in reply to grandmama16

Hello to you in the USA. Thank you so much for your reply.

I have to say my pain is pretty wide spread and some days worse than others etc.

Like you say the pain and fatigue is the worst. Feeling energy less and lethargic kills me as I’m not one for wanting to do nothing.

I’ve taken to having an afternoon nap which on most occasions really helps me.

So so sorry to hear about your daughter. That must of been absolutely devastating for you.

Sounds like you have a massive family to entertain and look after. I’m sure they bring much needed laughter and joy to your life .

It really sounds like you’ve got it sussed in the way of medication. It is just trial and error isn’t it? I really don’t want to be taking pain meds if I can help it . I take gabapentin regularly and 1 tramodol in morning and one at night and paracetamol in between if I need to. I’d rather try to walk off the pain, have a bath, hot water bottle etc if I can.

Some days are so much better than others then you wake and can barely move again... it is soooooo frustrating.

I’ll get there in the end. I just need to change my lifestyle a bit. I won’t let it beat me.

Take care and Happy Easter to you 🐣xx

aud01 profile image
aud01

Very nice to meet you and I wish you all the luck in the world with your health and coping with it !

Big hugs

Audrey x

vicky1981 profile image
vicky1981 in reply to aud01

Thank you so much for your reply.

I too wish you luck and every happiness.

Take good care and Happy Easter 🐣 xx

aud01 profile image
aud01 in reply to vicky1981

Thank you xx

Stevejj profile image
Stevejj

Best of luck to you hun. The mental state for me is the best way to deal with it. You can be in pain all the time but tackling it with a positive mind is better than a negative one easier said then done I know. Find walking helps me keep a little active which is good and gives me body a little boost. I wish you all the luck best wishes Steve xx

vicky1981 profile image
vicky1981 in reply to Stevejj

Hello and many thanks for your reply.

Yes walking my dog really helps me although it’s the getting motivated to leave the house 😂

Having a good mind set is definitely key. Some days I won’t take any crap from what my body’s telling me, but others to be honest I just want to curl up in a ball and cry!! Just depends on the day I guess.

Taking each day is what I’m learning to do.

Take care and Happy Easter 🐣 xx

Stevejj profile image
Stevejj in reply to vicky1981

Yes that’s the best way. It has taken me years to get to an ok level of understanding with it. Even now I want to be left alone and curl up with no one bothering me on the odd days. Have a lovely Easter 🐣 too xx

Hi Vicky,

Welcome to this lovely site, full of people with kind hearts who know exactly how you feel.

Just to read through the posts helps me, as I've gained a mountain of advice and ideas from fellow sufferers, which have helped me adapt my life.

My biggest hurdle was acceptance. Now I try to go with the flow. If my body says sit/rest, I do. By listening to my body and not trying to carry on, I find I'm a little more in control and able to do things albeit at a slower pace.

I now walk my dog at 3 x 20min walks instead of two hour long ones. Must admit, the small walks really help me (once I manage to get off the sofa having seized up and feeling like I've turned to stone 😉🙄)

My garden takes me two days instead of just a morning. I hoover downstairs one day and upstairs another.

Google Fibromyalgia Spoons, it helps explain the fatigue to family and friends.

I was on Tramadol once (for something else) and it completely washed me out. We all get the fatigue but maybe the Tramadol is making it worse? I'm on Co-codamol morning and night and Amitriptyline to help me sleep at night. I had too many side effects with Gabapentin. It's all a case of trial and error but maybe a look at you medication with your gp may help?

You will get there, I promise. Just listen to your body.

Big hugs and Happy Easter 🌞🐥

xx

vicky1981 profile image
vicky1981

Hi thank you so much for your lovely message and words of advice.

Yes this site is just wonderful. Everyone be been so kind and helpful.

I’ve been on Gabapentin for years now. The tramadol is a nasty drug and at one point I was taking far too many. I felt so ashamed.

I’ve now cut down to just two a day. One in the morning and one at night, rather than two three times a day.

That’s all I take in the way of pain relief unless I get a bad head and then I’ll take paracetamol.

I am on anti depressants too which I’ve been on for around 15 years.

I now take HRT and Vitamin D capsules as my recent blood test showed an extremely low level.

Absolutely yes. Listening to your body is key but probably one of the hardest things for me.

I guess I just find it so frustrating that all it might take is a short dog walk to completely wipe me out for the rest of the day.

Some days I can do a lot more but generally when I do a lot more I pay the price the following day.

I think it’s very easy to overdo it when you do feel ok. Sometimes I feel so proud of all I’ve achieved in a day but then I’m back down to earth with a huge bump the next day, when I find just getting out of bed and into standing position a huge effort 😩

Big hugs to you too and thank you. Really does mean a lot xx😊

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