Fibromyalgia changing...

[Wobblygirl]

I had ME for years and lost my professional career; the subsequent years of 'Why me?' and the anger led me down and down...Many yrs on, I then realised the fatigue, inability to live with time parameters and gross sadness was joined by pain!

Visited GP and when other avenues of testing led to nothing conclusive, fibromyalgia was diagnosed! It was a shock and whn pharmaceutical attempts led to more gross side effects, I decided drugs were not the way forward for me...

Eventually I accepted fibro and its limitations and carved out a new world at home, living with constant heat2comfort the aches and attempted small living!!

This was the way forward for me...

Friends disappeared, family thought I was lazy and I bought practical support in to help me be self sufficient at home. It was a new compromise but I lived without judgement mostly and I kept going...

Bouts of pain (costochondritis) and chronic migraines are just too difficult to cope with? But they do eventually subside...

Now aftr 3months of self diagnosed costochondritis and GP intervention testing other issues, I am faced with the reality of relying on too many painkillers. (I'm luckily v sensible abt drugs and don't abuse them!)

Life has got even smaller...

I still try and look for the positives and accept this style of living but the pain factor is v demanding!

I can walk out to extend my small life, but getting up and dressing is so debilitating, I rarely bother!!!

If I try really hard, I can do a 3.00/4.00 appt but it's almost dark by then!!!

I have to rely on uncooked food mostly because my arms are so useless. I live on my own so I often eat out to vary the menu... I've tried some meal options+hv one meal delivered that can be heated up! Fibro life is certainly changing with continuous body pain and more frequent migraines but can I ask whether this might be fibro deteriorating?

Or a winter episode that will reoccur every year?

Every breath I take hurts yet there is nothing found in Xrays etc! So I live very still because I hurt all over!!

I feel I've bn very fortunate to hv experienced the years of aching and throbbing but not this level of pain where life in a dressing gown is limited...

I still vow by simplicity and am grateful that depression is not on the horizon for me...

That is the worst pain!!!

[honeybug]

OMGOODNESS Wg 🤗❤️🥰

Ohhhhh sweetie …I see so much of me in your post. It’s amazing how those around us can’t relate; not even the doctor. I’ve tried repeatedly to have ‘the candid talk ‘ with my GP about how bad my FM is to no avail. My diagnosing Rheumatologist now retired is the one who said from the start “…severe fibromyalgia…” and it constantly progressed to I’m limited in movement, sleeping in my wheeled office chair since 2014 due to an unintentional back injury from a PT session to my then unknown back scoliosis. Our family friends acquaintances doctors; well everyone in our lives cannot comprehend it because there’s no way to unless they actually live it themselves. I went through years of functional depression surviving an extremely abusive childhood that then turned to emotional abuse that has continued in flashback form up to now. Even beyond the grave the abuse (does exist for me due to posthumous revelations) so I’m realizing that this will be with me until my last breath.

I have decided that I will NOT let those experiences cause further damage. IT WILL NOT WIN…I WILL!!!!!!

I refuse to let my conditions take over my mind too. Not going to happen as my mind is stronger than any/all things that have/will happen(ed) to me.

If people disappear from my life due to my problems; I don’t hold it against them how can they understand my problems when even the medical professionals are still in denial about it. However, those people who do stay in contact with me are my true friends. They care about me no matter what.

We know our own truths. We are not crazy lazy attention seekers or liars. It’s almost our duty to teach others/the world about the special cases/people we are and if they don’t want to believe our truths then that’s on them. My late dad (bless his soul) was such a person. He believed things that are experienced together but was the biggest cynic and so judgmental about others because he absolutely pushed himself to continue until it killed him; which he always said he would do and did. In his last days he was almost totally bedridden from his failing health but crawled to his stove to boil eggs to prepare lunch for my stepmom in a care facility he went to everyday until he blacked out from sepsis from total renal failure/blockage age 95. Yet he couldn’t truly believe my explanation of my medical/life truths when I couldn’t do whatever for him/others.

So don’t let whatever you are experiencing overpower who you are. Yes you are altered, time and illness creates a new reality. Excepting your altered existence is half the battle. All we can control is the second/minute/hour/day/month(s) year(s) at hand. One step at a time. If only one thing is accomplished daily be proud of yourself for doing it. As you re able do more with pacing in mind. If you can’t do physical activity do mental exercises like cell phone mind challenge games. Keep feel good movies or music at the ready. Anything easy to due while bed/ couch bound. It keeps you engaged when people aren’t available.

I’ve spent the last 10+ years wheeledchair bound at my dining table and I’ve kept my sanity/emotions intact despite being alone most of the time. I send my hubby out to do his elements that keep him fulfilled/happy because I know he will succumb quickly to depression and death if he would be housebound like me. He has to keep busy all the time it’s what makes him tick.

Please excuse this novella. When I’m compelled I must speak in detail to hopefully prevent misunderstandings which can be done so easily with the written word.

As I’ve said before sweetie I’m so sorry for your suffering so badly. Feel free to PM me I will answer you as soon as I can.

Much love and prayers,

EJ 🤗❤️🥰🙏🕊️🌿🌸🦋😇

please excuse typos don’t want to lose reply

[Wobblygirl in reply to honeybug]

You're such a star to respond...I too have had to cope with childhood abuse that has shaped my downward thinking whilst living with the consequences of depression...

That has to be the worst pain that I've ever experienced!

I thought losing my career was the worst, most embarrassing stage of living but eventually I felt freed from the toil, with more time to look at me and what I needed despite the M.E. fatigue! Then life, closed in a little tighter with fibro diagnosis and it's got tighter and tighter since...

But then I read your tale... It just sounds too dreadful. Being wheelchair bound for the past 10yrs makes me realise my fibro issues are a lot lesser than yours...

Thank you for sharing yr tale and putting my fears into the scale they need to be in!

I will survive this because you've given me the way forward... All of this has to be accepted with attention to the smaller details of living. I did the washing up when my migraine had abated... It's in my gratitude diary already!

10hrs of nothingness but at least I can walk upstairs and step into a bed tonight?

Your scenario is so hard and I admire your tenacity to look+find the positives...

I need to follow your lead and learn to accept more of the small living!

Thank you again for replying and helping me see the reality of gratitude...

I am indeed grateful for yr reply

Wxx

[honeybug in reply to Wobblygirl]

You are most welcome love. When we look around us (or on this site) you will find others with similar truths that will put things into proper perspective. We can always be worse than we are and thank God we are not. I think of babies infants school children who have deadly diseases like cancer organ failure etc and they carry on. It doesn’t diminish our truths it just helps us with encouragement to battle on.

I cannot take painkillers because I took full dose coated aspirin for 50+ years for my heart valve disease and developed Peptic ulcer disease. I’ve been sick all my life. I did everything I could till I couldn’t anymore. I do take gabapentin for my serious neuropathy and Paxil off label for my Inherited Erythromelalgia burning pins needles skewers in my head that affect my breathing with the worst of my daily symptoms. I have 70+ conditions and many overlap as autoimmune diseases.

But I am truly blessed to not have cancers or Covid or anything deadly.

Search this site for others suffering with your/similar conditions and try to help them. It puts your attention elsewhere and allows your pain to be put in the trunk/?boot of your car allowing you to navigate in the moment with the pain as background noise. I find it most helpful especially on really high pain days/nites.

Best wishes love and prayers,

EJ 🤗🙏🕊️❤️🥰

[Wobblygirl]

I usually do try and support where I can but aftr a very long read today on a thread where they really were giving up, I thought I'd pose the question to long term sufferers (25yrs or more 4 me!) does fibromyalgia deteriorate with time or does it just worsen during the colder months every year???I added some framework of my past to show I have been trying to pace and accepting a smaller life for many years but the recent 3months has become a crunch time to question whether anyone knows what happens next???

When I had cancer it certainly wasn't this despairing... Also there's an awful lot of compassion for a cancer diagnosis. I felt far more supported then...

Wxx

[honeybug in reply to Wobblygirl]

Apologies Wg 🥰

My cell is causing delays due to the changes with updates and it’s frustrating that I lose threads I want to keep answering like you.

Love your posed question is a hard one to put a definitive answer to. Because we are all unique individuals with so many facets to our lives/medical histories fibromyalgia will have many facets as well.

Mostly everyone has different experiences because of the multi sided influences they experience. There are some that have no other issues save FM alone yet because they have never been through anything else before it is so overwhelming that they are totally disabled from it. While someone like me who been sick all of my life from other illnesses while mine was diagnosed as severe in proper perspective to me it’s been difficult from the beginning but I’ve always been challenged with other conditions and have learned to push through it until I couldn’t. I’ve learned by my experiences that I must do this or it will cause me to fail in all of my conditions.

It’s really the same for everyone else too. We are like an army of 1 soldier (us) with many leaders ( our medical team) that in order to keep on going we fight the battles as a troop of 1 but the war as 1 + leaders to not lose the war.

If we give up/in then we and our medical team all lose. Our medical team wants us to win our battles so they can celebrate too.

Having said this to date there is no cure for FM. Don’t let this be defeating to read… remember that so many diseases were not curable in their beginnings. But with time and research a lot of them now are.

As a child I remember that all cancers were deadly/feared/barely treatable. My family ( relatives) 98% of them have had it (all forms) and have died with it. This is because of the strong genetic makeup for it plus the lifestyle choices that added to this like smoking drinking alcohol and exposure to carcinogens. My mother dad and brother all smoked; my dad was a light smoker but he breathed in his plus my mother and brother’s heavy smoking and second hand smoke which caused additional damage to their DNA and body. They all have passed now. Mother lung cancer dad advanced skin cancers plus bladder cancer ( that was assumed to spread wasn’t investigated further due to age 95 and dying from sepsis renal failure with bladder cancer involvement) brother had lung cancer and his renal failure caused sepsis extreme smoking caused major organ failure … even my lungs are damaged due to their nasty habits being forced upon me causing my compromised lungs.

Because we all are unique our experiences will vary greatly. As for your question of does this worsen with time? As a sufferer of it for 44 years now I can say yes it worsens I developed CFS in my 20s then around 30 I got my diagnosis At 74 in April my FM has gone from the usual diagnostic symptoms to include constant fatigue that when stress is experienced the exacerbation equals narcolepsy ( which my GP doubts) If I have to tax myself to prep for and endure an outing for doctor/hospital once home I now go into a narcolepsy spell that lasts for hours My stress from my dad’s recent dying/ death was so traumatic that I’m still having narcolepsy spells that have been 3 months long and are finally letting up However from the start they overtook my body barely ate/took meds/used loo (2 times my narcolepsy spells lasted 2years each after spine injuries) Thank God for my hubby understanding and supporting me for I did nothing but exist at that time) I experience everything from my FM itself much worse with time To be encouraged; it’s all relevant to mindset Be determined to deal with it/ everything in baby steps The moment hour day week month year at a time The future is not known for it hasn’t come yet All that’s here is now Keep your focus on now When others doubt/deny it’s okay let them. You know your truth Be true to yourself and carry on by doing everything in your power to help yourself in the moment Seeking our help here to support you in your need will aid in pushing on with the tomorrows

Love and prayers

EJ 🤗❤️🥰🙏🕊️🌿🌸🦋

[Mrdiagnosis]

Do you read ? A book that changed my life completely. " The power of now" by Erkart Tolle . It's available on audible book too . I found the audio version easier as it's a very hard read . It's about the fact that you are 2 people. You....and your thoughts . It's spiritual but not religious and it really explains how your mind thinks it's you but it isn't. You are you and your thoughts are a mechanism.

Hard to explain. But living in the now and not the past or future is how I cope.

Try it see if it helps but don't give up xxx

[Wobblygirl in reply to Mrdiagnosis]

Thank you. I do try and live in the present as for too many years of therapy you're constantly engaging with the past...

Today I've woken in considerable pain but I don't hv any appts today so that's a bonus! I won't get dressed but will relax in leisure attire after a soothing bath...

I have to look for the positives. And maybe take advantage of free time to create...

I do try but the pain restricts everything!!

Thank you again, Mrdiagnosis.

I will look into yr suggestion.

Wx

[Mrdiagnosis in reply to Wobblygirl]

I get it ... I'm the same but we have to remember. We are alive and don't we know it... The pain is a constant reminder. I'm 56 and many many people don't make it to this age... My own father died aged 37 when I was 10 so he's been gone longer than he lived

Not trying to be morbid ...just real

It might not be the life we wanted ...but it's life and we have to find the joy and positivity.

Enjoy your bath and relax x

[bookish]

Hi, could I ask did you/do you have regular vit B12 injections due to the ME? Lack of adequate cellular B12 could be affecting your mast cells (causing inappropriate release of inflammatory chemicals such as tryptase, which is cartilage-degrading and could be contributing to your rib cage and other pains). Lack of B12 may also affect pituitary signalling to the thyroid, so it may not be producing enough thyroid hormones. Colder weather certainly affects me (fibro for approx 48 years) and of course the thyroid has to work much harder in cold weather to keep essential body functions working, so that there is less ability to maintain the rest. Cold and windy weather can also trigger those mast cells. Magnesium oil spray can be very helpful. The B vitamin group is also very useful for migraine treatment - especially B2, B6, B9 and B12 (the methylation cycle). If not already treating, please don't supplement without getting properly tested as you may well need B12 injections - taking oral may increase serum level but without repairing damage or slowing progression. pmc.ncbi.nlm.nih.gov/articl... Best wishes

[Wobblygirl]

Thank you so much for this input, I will have to pursue it with my GP.

Thank you for yr advice and your reaction to cold weather comparisons...

I'm grateful for any insights. It's just intolerable tonight...

Wx

[Yassytina FMA UK Volunteer]

Life does change for sure and I am always saddened too read when family and friends drift away, this happens all too often , a lot of us will have seen this on our Fibro journey. Winter is not the best time of year is it, I am currently tucked up indoors fighting another viral . Sorry too read of your pain , horrid too live with constantly, we try find ways too help ourselves and lessen the pain. It helps too reach out and talk here sometimes , families, friends will not get it …. Only people that walk in our shoes. Take care x

[Wobblygirl in reply to Yassytina]

Thank you for yr reply, especially when you're ill too!I'm relying on stronger painkillers now, which I've never done b4...

Despite the heat I apply I can no longer find relief in that way, which kept me going b4! But I persist with the daily hot baths.

Today I started the drug regime earlier and pain is more moderate so far... For that I am so grateful! Maybe I can clean the bath+make something to eat while this episode lasts???

Thank you for reaching out.

Your understanding and those of a few more here made me felt heard.

I really was desperate for a voice and when no one replied I felt more than alone! The desperation that I didn't mirror anyone else's worsening pain was quite terrifying!

I am so grateful for those who did reply to my request.

Hoping you can relax in the warmth to pass the time today? And improve your recovery no matter how slow???

Waving, from Wx

[Yassytina FMA UK Volunteer in reply to Wobblygirl]

Sorry I had not seen your post before as not been on my game , but I think just listening too someone reaching out and your having a hard time the least I can do is reply and chat, gosh it’s blowing a gale out there (I’m in Suffolk)glad in a way I’m tucked up indoors , my husband has too go get the grandboys soon 🤣 as my daughter is full time currently teacher training, she’s been left on her own today (no shadowing or watching )8year olds but they love her , she’s only there for a short period and then they move them . You sound like me , have a bath , clean the bath after ✔️go too the toilet , clean it ✔️, my hubbie did do alittle ironing this morning he s trying lol😉dosent cook so we had cheat dinners 3 days , but I’m back doing dinners and he helps clear away with me. Do you watch the TV at night and, why I ask therechas been some good dramas on lately , just takes your mind off awhile, hubbie has got me Netflix so found some good stuff on there too xx

[Suffering24 in reply to Wobblygirl]

Definately hot baths help , others think I’ve got ocd with the amount of baths I have .

Something to know is that you can tell your water supplier and they will put you on the correct tariff and help support you via grants etc I’ve only liked into it a bit so please enquire but it’s worth checking as any help is gratefully received in all areas . As to heat .. use heat pads and electric blankets and electric heated throws … I even have my heated seat on in the car with the air con on in the summer just to find ease in my back as I suffer with that too …

Use every amenity .. every benefit you can . Call up , email , enquire about everything you can . Try keep positive I know it’s hard as I find it that way too but don’t ever give up on yourself even if others can’t manage our fibromyalgia we have to keep going .

I distract myself constantly just to try forget I have this chronic pain . Friends think I’m fine because I smile and laugh being with them but I get home and I can’t wait to be having my hot baths help and getting into my warm bed .

I have a large bed I won’t get rid of it just because I’m on my own . I have a single electric blanket then if and when I get too hot I move over to the other side … it works well for me especially as my feet are often cold lately . Take care everyone hope I’ve helped someone

[Wobblygirl]

Oh yes the dramas have kept me going!Started watching The Vanishings on Ch 5 last night and I definitely will continue...

I don't hv a TV that records but when this one conks out I would like one that does to watch TV when u need it rather than when on broadcast. I'd like that distraction throughout the day+especially at wkends...

Not able to find distraction in books yet, so watching good TV drama is the next best thing! I can turn it off if it's trash!!!

Give my love to Suffolk xxx

We love exploring yr County...

Wxx

[Suffering24 in reply to Wobblygirl]

Distraction of dramas true stories documentary programmes are good . Very informative films on painkillers true stories very interesting to find out about some of these drugs being prescribed ….