40+ years of Exhausting Fibro!!

[BlueBlackCatLady]

Hi everyone,

I have not been on this forum for a long time now due to declining health and numerous personal stuff (all pretty traumatic/stressful unfortunately!) Anyway, in early February this year I developed a really painful right arm/shoulder that I felt wasn't fibro-related. Local chiropractor said I'd pulled my rotator cuff muscle & I had several treatments from her from then on, all of which seemed to be making things worse. Around the same time I started up what I would consider to be a 'Fibro flare' but far worse than I've ever had in 40+ years of having it! (I'm 61 now & have had Fibro since teens - I literally have every symptom under the sun with it - though it wasn't properly diagnosed until about 15 years ago.) Anyway, I am now suffering with extreme tingling - to the extent of actually being painful - and a violent pins & needles/electricity feeling all over my body. My arms/hands can hardly move & my already difficult walking made worse by extreme tingling in my feet.

I gave up with the chiropractor a few weeks ago and have now seen my GP who says I should have been seeing a physiotherapist, not a chiropractor!! He also did numerous blood tests to rule out anything else and concluded this extreme flare and extra debilitating symptoms are just Fibro, and a result of the original rotator cuff injury ... I literally don't know where to put myself and am in so much pain that I'm often close to tears. I have chronic tinnitus (since teens and part of Fibro 'umbrella') as well as balance issues, stomach problems - you name it!! Sleep is a luxury I never get and - as most Fibro suffers will know - is never deep or restorative any way.

It has now got to the point where, coupled with all the other stressful stuff going on in my life, I just can't take it any more. 40+ years is a long time but this extreme pain/tingling etc. just takes the biscuit. Has anyone got any idea what I can do for the 24/7 pain/tingling please? I'm restricted with painkillers as I'm on max dose Tramadol and much else!! My doctor could only suggest Amitriptyline which, like many drugs, I can't take! I have only ever lived half a life since teens (not able to work etc.) but now can't bear the thought of it being an even more hellish/restricted existence for however long it is that I've now got left. I try to be a happy/smiley person, despite it all, but I'm running out of good humour with these days ... I feel I'm fighting a losing battle, with no help/hope at hand!

I'd be grateful for anything anyone can suggest and thank you for reading this far, with apologies for such a long comment/question!

[Smilesalot]

This is something that I get occasionally.The 1 st time I had it I couldn't lie down long sit down long and was beyond coping. I couldn't sleep or eat. Electric shock pain shooting all over and painful pins and needles.

Are you diabetic ?

I have peripheral neuropathy all the time. I haven't mention ed it to anyone except on here. But this is much worse.

I can only give you a hug and wish you well as I don't know what it is..

Hugs🤗

[BlueBlackCatLady in reply to Smilesalot]

Hi Smilesalot

Thank you for taking the time to respond. Yes, I am diabetic and, to be honest, my fears were that this was extreme neuropathy connected to that - in fact, my chiropractor said as much! However, my diabetic glucose levels (taken just two weeks ago now) are low - 6.6, dropped from 6.9 in February - and my doctor is adamant that this problem is not connected to that.

Over 40+ years I have learnt that Fibromyalgia has a 'mind' of its own and does it's own thing - certain symptoms come when they want, and go when they want, not when convenient or logical to you! I often compare living with Fibro as being like living with a stroppy, moody teenage daughter! So I do know that something (possibly other than the muscle tear) will have set off this latest episode. I suspect it's the chiropractic treatment has not helped things on this occasion. I'm sure that eventually this too will pass (that's my mantra to be honest!) It's just how to deal with it in the meantime...

I suspect (pray) that if I can get the actual rotator cuff injury cured, the tingling etc. will stop (though I live with such symptoms most of the time tbh - as I know you do - just on a much lesser scale and mainly only at night/when trying to sleep.)

I'm actually trying to get off of Tramadol at the moment, having been on it for 15 or so years now and it no longer doing any good seemingly and, as previously said, Amitriptyline is hateful as far as I'm concerned. Therefore trying to find a painkiller is a struggle. I used to take ibuprofen/codeine until I was recently told I shouldn't take codeine with tramadol! I now take just ibuprofen - but it really doesn't work and long-term usage upsets my stomach (I have colitis, IBS, diverticulitis+ a hiatus hernia and live with constant digestives problems as it is!)

Anyway, I can only live in hope as all us Fibro sufferers do. But thank you for your kind response. I wish you all the very best. Hugs to you too.🙂

[Albionrfx]

Hi BlueBlackCatLady,

I’m so sad to hear of your struggles with fibromyalgia and other chronic pain and other health issues. I’ve been living with pain and other health issues since 1989 and many times I get desperate and don’t know where to turn to and what to do!

I’ve tried all the self-care stuffs e.g mindfulness, breath work, Tapping, Tai Chi etc… They all help but it doesn’t get rid of tingling or burning sensation in the body. Tramadol & Pregabalin help a little or other pain killers but they are all short-lived relief. For my burning pain sensation I find magnesium spray or tablets quite effective. Distraction helps too so I found myself watching a lot of old Tv programs such as Colombo, Monk, Agatha Christie, etc….

I don’t know what else I can say except to sympathise with you and to let you know that you’re not alone in this crazy chronic pain journey!!!!

Stay strong, and keep smiling, sending you lots of positive thoughts and positive energy.

MLT

(Albionrfx)

[BlueBlackCatLady in reply to Albionrfx]

Hi Albionrfx,

Thank you for so kindly replying and your sympathy and empathy. Like you, I have tried absolutely everything (and I mean everything!) under the sun to help with my Fibro over the years. I'm a real advocate for all things natural, but nothing really totally helps in all honesty. And, yes, distraction is the best/pretty much only thing you can do when things get really bad like now!

Over 40+ years I have learnt that Fibromyalgia has a 'mind' of its own and does it's own thing - certain symptoms come when they want, and go when they want, not when convenient or logical to you! I often compare living with Fibro as being like living with a stroppy, moody teenage daughter! So I do know that something (possibly other than the muscle tear) will have set off this latest episode. I suspect the chiropractic treatment hasn't helped on this occasion. I'm sure that eventually this too will pass (that's my mantra to be honest!) It's just how to deal with it in the meantime...

I suspect (pray) that if I can get the actual rotator cuff injury cured, the tingling etc. will stop (though I live with such symptoms most of the time tbh - just on a much lesser scale and mainly only at night/when trying to sleep.)

I'm actually trying to get off of Tramadol at the moment, having been on it for 15 or so years now and it no longer doing any good seemingly and, as previously said, Amitriptyline is hateful as far as I'm concerned. Therefore trying to find a painkiller is a struggle. I used to take ibuprofen/codeine until I was recently told I shouldn't take codeine with tramadol! I now take just ibuprofen - but it really doesn't work and long-term usage upsets my stomach (I have colitis, IBS, diverticulitis+ a hiatus hernia and live with constant digestives problems as it is!)

Anyway, I can only live in hope - as all us Fibro sufferers do. But thank you again for your kind response. I wish you all the very best. Sending empathetic hugs your way!🙂

[Bethenny]

Hi there. Exactly the same happened to me after having treatment with a chiropractor, I had no fibromyalgia symptoms beforehand, so often feel it was the cause of my fibromyalgia! When I went to the doctor he sent me for an MRI scan, I believe to check for nerve damage. He did give me amitriptyline which I only took for a short while as it is heavy duty so didn't want to stay on it. That was three years ago and I can't honestly remember how long it took, but it did improve slowly and I don't have those issues anymore. If you want to direct message me with any other questions please do. Big hugs 🤗

[BlueBlackCatLady in reply to Bethenny]

Thanks, Bethany - I really appreciate your reply, especially as it's such a positive one! Over 40+ years I have learnt that Fibromyalgia has its own mind and does it's own thing - certain symptoms come when they want and go when they want, not when convenient or logical to you! I often compare living with Fibro as being like living with a stroppy, moody teenage daughter! So I do know that something (possibly other than the muscle tear) will have set off this latest episode. And, yes, I suspect it's the chiropractic treatment. I'm sure that eventually this too will pass (that's my mantra to be honest!) It's just how to deal with it in the meantime...

I suspect (pray) that if I can get the actual rotar cuff injury cured, the tingling etc. will stop (though I live with such symptoms most of the time tbh - just on a much lesser scale and mainly only at night/when trying to sleep.)

I'm actually trying to get off of Tramadol at the moment, having been on it for 15 or so years now and it no longer doing any good seemingly and, as previously said, Amitriptyline is hateful as far as I'm concerned. Therefore trying to find a painkiller is a struggle. I used to take ibuprofen/codeine until I was recently told I shouldn't take codeine with tramadol! I now take just ibuprofen - but it really doesn't work and long-term usage upsets my stomach (I have colitis, IBS, diverticulitis+ a hiatus hernia and live with constant digestives problems as it is!)

Anyway, I can only live in hope as all us Fibro sufferers do. But thank you for your kind response. I wish you all the very best. Hugs to you too.🙂

[Guppy_mama]

Hi,I'm so sorry you are suffering so much and hope you find some relief soon. Your experience can be a cautionary experience for the rest of us. I will now avoid chiropractors in case they make my symptoms worse. That's the only positive to come out of this. Sorry to be so negative, I really do wish you well x

[BlueBlackCatLady in reply to Guppy_mama]

To be honest, chiropractors have been a saving grace for me over the years, this is the first negative experience I've had with such! And, remember, my current flare/extreme symptoms may only be due to the original shoulder injury, rather than the chiropractic treatment specifically - I shall probably never know for sure. We have only been moved to a new area for a year now and, during that time, I have had to have other treatments with this same chiropractor, namely for jaw problems following a complicated tooth extraction. She got me through it all and it really seemed to help. Prior to that, I'd had numerous treatments for many years from a chiropractor where we used to live (though I have to say that the former one was particularly gentle, the new one possibly not so much.)

Anyway, don't be afraid of chiropractors, they can be useful!! Just be cautious about who you choose/use and the methods they employ (there are different forms of chiropractic treatment, some more gentle than others!) Having said all that, I honestly don't think I will be going back to this particular chiropractor now. Though my husband finds her very good for the back and knee problems he has - then again, he doesn't have fibro! Fibromyalgia is such a complicated, sensitive and temperamental illness - and SO damn hard to treat/help!! I send my very best to you and wish you well too.

[Elaine200756]

Dear me! Sounds horrible BlueBlackCatLady. I try several non medication things for pain management. I use a weighted blanket 4mg. It feels really comforting, like a warm and gentle hug. I find that having a bath with magnesium salts is great for dealing with aches and pains and relaxing the body. If you can deal with these things it reduces pain because when you're tense and anxious, as we are when we're in severe pain, it makes things worse. The magnesium spray is great if you can't get a bath, as you probably can't at the moment due to severe pain.

I have tried strong cbd cream for pain relief. It works but it's expensive and the effects don't last long (I paid £50 for a med size pot). My gp prescribes ibuprofen gel at a much higher strength than the over the counter ones and they work too but I found it took 3 days of regular use twice a day before it really kicked in, so I wonder if it was the cumulative effect.

Gentle, stretching exercises are good. You obviously don't want to move with the pain you're in, but afterwards it does feel better. Distraction as someone has said is good, especially if you watch something that makes you laugh.

I will pray for you that you get some relief from your suffering. With love, Elaine xx 💔

[BlueBlackCatLady in reply to Elaine200756]

Hi Elaine 200756,

Thank you for taking the time to respond and for your kind sympathy/empathy.

Over 40+ years I have learnt that Fibromyalgia has a 'mind' of its own and does it's own thing - certain symptoms come when they want, and go when they want, not when convenient or logical to you! I often compare living with Fibro as being like living with a stroppy, moody teenage daughter! So I do know that something (possibly other than the muscle tear) will have set off this latest episode. I suspect it's the chiropractic treatment has not helped things on this occasion. I'm sure that eventually this too will pass (that's my mantra to be honest!) It's just how to deal with it in the meantime...

I have tried absolutely everything (and I mean everything!) under the sun to help with my Fibro over the years. I'm a real advocate for all things natural, but nothing really totally helps in all honesty. And, yes, distraction is the best/pretty much only thing you can do when things get really bad like now! I did once try the weighted blanket you suggest but I felt like I was suffocating under it - unfortunately it just didn't suit me! And I have drawers and cupboards absolutely full of stuff (creams, potions, tablets - you name it) that didn't work or maybe only half worked! There is just no easy answer sadly. 😳☹️

I suspect (pray) that if I can get the actual rotator cuff injury cured, the tingling etc. will stop eventually (though I live with such symptoms most of the time tbh - just on a much lesser scale and mainly only at night/when trying to sleep or rest.)

I'm actually trying to get off of Tramadol at the moment, having been on it for 15 or so years now and as it appears to no longer doing any good and, as previously said, Amitriptyline is hateful as far as I'm concerned. Therefore trying to find a painkiller for both general fibro pain and now this nerve pain is a struggle. I used to take ibuprofen/codeine until I was recently told I shouldn't take codeine with tramadol! I now take just ibuprofen - but it really doesn't work and long-term usage upsets my stomach (I have colitis, IBS, diverticulitis+ a hiatus hernia and live with constant digestives problems as it is!)

Anyway, I can only live in hope - as all us Fibro sufferers do. But thank you for your kind response, and most especially for your prayers. 🙏 (I couldn't get by without those!) I wish you all the very best. Sending empathetic hugs your way! 🤗🙂

[Elaine200756 in reply to BlueBlackCatLady]

Oh, I feel sad that your visit to the chiropractor has caused you so much pain and suffering BlueBlackCatLady. You have multiple illnesses to deal with too. You have a lot of experience of fibromyalgia and trying to deal with it of course. It's a shame that you haven't been able to find anything that works for you. As you say, there is no easy answer. It's a complex condition, affecting different systems of the body. I have to agree with you that if you have your rotor cuff sorted out the nerve pain should be at least reduced and bearable, so I hope that you get it done very soon. With your multiple illnesses, if you need medication,that complicates your medical treatment I imagine. There are side effects with any medication and what you need for one thing works against another! Even something as simple as what you can eat.

Thank you for sharing your experience and knowledge about the nature of fibromyalgia. I will know if I need to now that distraction is one thing that works. I will keep up with the prayer for you. Take good care of yourself. God bless.

With love and prayer, Elaine xx 😘

[BlueBlackCatLady in reply to Elaine200756]

Bless you, Elaine! You sound like a lovely, kind and compassionate person ... I just wish there were more people in the world like you! Having now read your profile, we seem to be suffering from very similar ailments/symptoms to be honest - and you are also just a few years older than me. I'm sure you would agree that a strong component of Fibro is past trauma/stress (I was diagnosed with extreme PTSD many years ago and have an extensive history of trauma - right back to childhood. I also had post-natal psychosis after the births of both my sons, now grown up - the first time, so bad that I had to be hospitalized in psychiatric wards for over two years.) But you have absolutely hit the nail on the head regarding the complexity of the condition and certainly of my own situation.

However, my fibromyalgia really is at an all time high right now, coupled with an increase (which I didn't think possible!) of my chronic tinnitus which has always prevented me from sleeping - another aspect of Fibromyalgia that I think gets over-looked: That is, sleep - not being deep or refreshing (mine's always full of heavy/bizarre dreams anyway - even if I manage to get any actual sleep!) Fibro is a vicious cycle really and it saddens me that it's still not taken more seriously and money given for research. Here in the UK there appears to be very little research, if any. When I was first diagnosed in my late teens - long time ago now - I was treated like a mad woman (I was told it was 'all in my head' and that I was an 'attention seeker'! LOL!) Things have improved considerably in recent years (thank heaven!) but there are still doctors and medics who just think I - and others like me no doubt - are hypochondriacs. Believe me, I've seen literally hundreds of medical professionals over the years! My poor hubby is long-suffering in that respect! The way I've been spoken to by some has been disgusting - and that includes paying privately as well as on the NHS!

Anyway, enough of feeling sorry for us Fibro sufferers! We must continue to be onward and upward and pray that one day there will indeed be a cure, or at least some kind of relief. The last couple of years have been a nightmare to be honest. We moved house just last year (after nearly 30 years in our old one) and everything seemed to collapse around us from day one, with so much happening and going wrong! It all did my fibro no favours! Then, just a few weeks ago, my husband was made redundant and then, shortly after, was rushed into hospital (where he stayed for nearly 3 weeks) as he had sepsis and we nearly lost him. Right now I just want a break to be honest!

Thank you again for your kindness. I wish you all the very best. God bless you too - and do keep up those prayers 🙏🙏🙏, we all need them! 🙂

[Elaine200756 in reply to BlueBlackCatLady]

Hi BlueBlackCatLady. Thank you for your kind words. I totally agree with you. I have been diagnosed with Complex Post Traumatic Stress Disorder too. I went to a peer support group for Fibromyalgia and I asked if anyone got fibromyalgia after a bereavement or trauma of some sort. Every single one of them said yes.

Your illness of psychosis following the birth of your baby sounds horrendous as does your tinnitus. I've often thought re tinnitus how people cope with it. Nightmare. And I can't even imagine trying to care for a newborn while you are so ill.

I can imagine how you have been treated, with your fibro going back to your teens, bless you. I too have had really bad experiences with doctors and nurses. It makes you feel worthless and as if you are just malingering. I have had fibromyalgia for the past 18 years.

My son's mother in law died 2 years ago of gallbladder cancer. Before she was diagnosed she was treated dreadfully, just dismissed and she was so ill. It was a shock to hear that you were treated so badly even though you were paying privately!

I can understand after reading how difficult the past few years have been for you and your husband and how your fibro went to another level. I can't imagine almost losing your husband. It must have been terrible. And your house! You must have thought it would never end.

No wonder your fibro has got worse. I find stress will trigger a flare up. You don't have a choice about avoiding any stress in your life. Circumstances of life are beyond our control. We can only choose how we will respond.

I think fibro is a crafty thing. It gets you when you're not expecting it! I'll be praying for you. We are stronger for having to deal with this awful illness. Take care, love and prayer, Elaine xx 🙏💖

[BlueBlackCatLady in reply to Elaine200756]

Thanks again, Elaine - your comments have helped a lot. I think sometimes all we ask is to be understood really. And, yes, the stress from so much of late (+ a lifetime really) has all built up. My doctor said to me, not long ago, you need to start really trying to de-stress. "Try not to stress so much, he said - just relax!" (lol!) ... I told him I will stop stressing when I have nothing to stress about!!

I do wonder why some of us have this heavy burden of Fibro (and other complex and debilitating misunderstood illnesses of course) to deal with ... You are right in that it makes a person stronger (mentally!) but it also often defeats you and turns you into a gibbering wreck too!! Many a time I have literally been on the floor with both pain and emotion and have had to use all my strength to pick myself up and start again ...

Not sure who really needs to go through all this hell just to get 'stronger' really?! Perhaps we were very bad in former lives! LOL! 😜😀

Take great care and look after yourself. I hope you too start to get some relief in your Fibro journey. xx 🤗

[Elaine200756 in reply to BlueBlackCatLady]

Yes! Thank you. May we both have some relief and healing in our fibro journey.

I have just been diagnosed with heart disease. I thought it was the fibromyalgia getting worse.. It's exhausting just peeling a mandarin.

Does your name mean that you are a cat parent? I love them but cannot have one because my husband doesn't want one. We lost our beautiful little dog, Sandy, in February. I miss her and dream about her a lot.

Take care BlueBlack CatLady xx 💝

[BlueBlackCatLady]

Oh, I'm so sorry to hear about your heart ... why do so many people have to suffer so much and others so little? Life sure ain't fair. That's awful for you to be SO exhausted. My fibro has always meant that I have little to no energy and get incredibly exhausted, made worse at the moment of course by this extreme neuropathy (or whatever it is) - but what you've got is terrible, I really am very sorry. 🤗

And, yes, I had two cats (brothers) but one sadly had to be put down due to a brain tumour less than 2 weeks after we moved to this new house (April '23.) The same day my hubby and I went down with really bad Covid (I told you before how everything went down like a pack of cards at that time!) I still have the one cat, Mesmer (the other one was Merlin) who is coming up for 14 now and is a delight - he's so close to me now. Don't know what I will do when he goes, bless him. Again, I'm truly sorry that you lost your little dog recently. We grow so attached to our furry friends don't we. Unlike humans they don't judge us and are always there at our side ...

Can they not do something for your heart? Presumably you're on heart medication now?

I do hope life improves for you. You too take care. xx