I told You that

[ChristCornHell]

After being in agony for 4years and treatment for almost every possible illness as a last desperate bid before I went back on heroin I decided to look at the symptoms of fibromyalgia. I avoided it even though many sufferers swore that it's this. Today instead of going for heroin for the first time in over 4years I am going to tell the doctor calmly to look at what they all missed for 4years. Medical science can sit back down. I still ain't finished with my fragile frame for a beautiful mind. I doubt these idiot doctors would know which end plugs in.

[Sosbach]

Christcornhell, I wish you well but I hope you are prepared for an underwhelming response from your doctor. They refer to us as “heart sink patients” - as in, THEIR hearts sink when we walk thru their door. It’s because they haven’t got a lot to offer us, there is no easy fix for this thing. I worry for you because heroin is such a good painkiller.

[ChristCornHell in reply to Sosbach]

Thank you. I know many people who have had this and I know the main thing, a diagnosis is not the end. I dislocated my hip about a year ago and refused the morphine injection after a couple of years advice from many addicts, none of who were talking with a dislocated hip. I know that people who have this are often said to be faking it. The pain is manageable, and VERY real. Last week I was convinced my knee was going to snap. For about 48 hours I was unable to bend or straighten my leg without great care. The Severe cramps as I called them were such pain with little to no relief from quinine. The severe itching like scabies was not just my eczema or treated totally with anti histamines. Changing my Mirtazapine to duoloxatine then sertraline did nothing but exacerbate my mental health due to lack of sleep. Going through treatment for hepatitis C got rid of the virus but didn't help my ibs. Endless bloods and scans and x-rays on my 15 year old hip turned up nothing. CBT helped with memory loss but didn't bring my memory back. My erratic moods and libido are a work in progress..... But the one thing that really made it worse was a doctor telling me I was a hypochondriac (the only problem I don't have I have been scared to tell people and scared to accept it. I am quite aware of the risks of opiates and also aware that I have a choice. Having a name for my body being pretty messed up will not help me either. Being able to tell doctors and raise awareness will harm neither me or fellow sufferers. I often want to give up, but stubbornness is my worst trait. I have been on pregablin 3X 50ml for about 2 years. I argued against it and Dr's assured me this was fine. Now it is a controlled drug I am being treated like an addict yet they just increased it to 4 X 50ml. I don't want heroin and I don't want.... Well I don't want the pain. I do want Doctors to learn what it is what causes it and what can treat it. If it is trauma based it explains why so many addicts especially female are suffering. The whole "it's mental" thing is frustrating. Isn't ALL pain.? I have about 20 piercings I have done myself I am a pacifist who will argue with anyone. My pain threshold is large and I know MENTAL. I am not MAD (ask P. I. P assessors) I am just a bit angry and frustrated... Maybe that's my menopause[sic] I am a man in pain willing to do many things apart from run around the streets for drugs. The doctors seem to want this... Even for their little pills. I am going to remain one of their statistics.. And not be pushed around or swept under the carpet. Oooh s#&t (edited by admin), I better hurry to the chemist this memory loss is a real pain. Stay positive and keep moving. I will get through this and so will you. Rant over.

Drops microphone and exits stage left

[Sosbach in reply to ChristCornHell]

..you do have a beautiful mind

[Smoggie1 in reply to ChristCornHell]

I saw a bone specialist vwhen I went to accident and emergency in April in agony with solid leg and veins bulging..the x-rays showed mild arthritis and fluid leaking through knee causing baker's cyst...he said my fibromyalgia is magnifying the pain...non of my doctor's had thought of this but I believe what he said...I fell off work surface 5yrs ago and now knees elbows which I fell on can be agony and fingers and tight hip have arthritis and they go from burning pain to chronic pain..like you I am not soft and have coped with this and other conditions for 16yrs. Because fluid leaking slowly through joint my brain with the fibro is sending fluid to protect it causing me agony..nothing stopping pain.went to pain specialist at hospital and he says come of codydramol 5 days a week and ectorcoxib which I take for inflammation as allergic to naproxin.take 2.5percent CBD oil and try to cope as pain killers don't work after awhile and so you need more... He included in the list pregabapentine and morphine and others...I am now in worse pain and cannot hardly do anything...u have phone call with rheumatologist on 2nd September... But I am not holding out much hope.. it seems they don't mind giving you diagnosis but then don't offer much help.most of the time I have to self diagnose myself and ask for help when something different as they try to put all stuff down to fibro... As TM joint in jaw being latest which took 3 attempts at doctors to work out chronic pain in jaw and upside of face and head. But can offer no treatment except massage with ibroprufin gel.... I pray you have a more understanding doctor than I have.my family doctor retired and even before covid was pot luck who I got due to shortage at out surgery in beccles in Suffolk..I have totally lost faith in treatments I get now...the pain specialist said try alternative treatments...but has not suggested what and I got CBD oil 5percent and does nothing for pain...

[ChristCornHell in reply to Smoggie1]

My heart goes out to you. My ranting yesterday used to be a rare occurance, but I find holding on to my frustration and anger is making the pain worse. Any treatment is worth going into with a positive mind. When one of us finds something that we feel alleviates the pain, and waiting for doctors seems a waste of time, we know who to share it with. If you can't find an empty space in which to scream at the top of your lungs, do it in your doctors surgery, or share it with a fellow sufferer. Sunshine is a big help to me. I think it's more that feel good factor than vitamin D?

[Smoggie1 in reply to ChristCornHell]

Yes I ok if not too hot as that makes fibromyalgia worse but arthritis Bit better.i had problem with but d..if your lacking it causes symptoms similar to a flare up of fibro...so I take extra vitamin d just so that doesn't add to the other problems I have...I found swimming helped as I could just plod along at my own speed with my goggles on and ear plugs and hat...due to ear infections...and I would be in my own little world..but covid has stopped that as outdoor pool I use has waiting list every day...so I put on headphones and try to relax that way...at moment you cannot attend docs surgery they phone you and the one doc I refuse to speak to does the ringing..he doesn't believe in M.E..which I also have...so I've given up on them helping me... Especially with covid..so I'm back to just going to bed as with legs bad cannot do much and self medication till call with rheumatologist.. I do hope you get help as there are some good docs out there..I just haven't got one.x

[Midori in reply to Smoggie1]

Complain to the Practice Manager that the only doctor you get to talk to doesn't believe in ME, etc. He is probably an old one close to retiring, is my guess, Younger ones tend to be more up to date.

When I was young (back in the Jurassic), My GP didn't believe in Allergies, until I obliged him with Anyphylactic shock!

Cheers, Midori

[Smoggie1 in reply to Midori]

I would if it was worth doing but he is now the head doctor of practice so I am fuk__ed.he is the one that couldn't understand why I was in so much pain with the mild arthritis and his only offer over a year ago was co codamol...the most help I got was from 2 women nurse practitioner but you cannot go docs cos of covid you email in or ring and then they ring you to decide if they wanna see you and he is doing the ring backs..I have t be careful what I send in email incase they treat me even worse...

[Midori in reply to Smoggie1]

Is there another GP surgery in your area? Change; You are enitled to if necessary; You don't have to suffer that old fart if you are getting bad service based on his personal prejudices.

Take your NHS card and re register with another Surgery, You don't have to give a reason.

Cheers, Midori

[Sosbach in reply to Smoggie1]

I’m sure it’s all the angst of trying to get help and dealing with disbelieving medical profession that made me start clenching my jaw so hard -thus the TMJ. It’s not a fibro comorbidity it’s a byproduct of dealing with medicos!

[Smoggie1 in reply to Sosbach]

Yeah I know rust time treated for ear infection as I have hiatus hernia and get acid up in ears too..so have to differentiate that with new symptoms.givenbear and nose drops..got worse..then given antibiotics by second doc.tgen went back as agony up face and head and clicking..then got diagnosed third visit but told not much can do just rubbin gel

[Sosbach in reply to Smoggie1]

For what it’s worth Smoggie1, I also got TMJ and couldn’t believe it when I read it’s a fairly common Comorbidity with fibro... The specialist said keyhole surgery would fix it, luckily I got second opinion from rheumatologist who warned not to have surgery until I got the fibro sorted..(looking back, shows how much he knew, “get your fibro sorted first” as if people get cured everyday!) Anyway, glad I didn’t get surgery because the tmj resolved by itself. The only thing I did was I became hyper aware, or hyper vigilant, or, just very mindful if you like, about how I was holding and clenching my jaw, especially at night. I had been totally unaware previously that I was clenching and holding my jaw in a kind of weird jutting position....long-story-short, mindfulness and CBT strategies fixed it! At least that’s one good news story I can share.

[alison84230 in reply to ChristCornHell]

Hi. I have had the same treatment as you for hep c and d it cleared thst up. I went to my gp after 20 years of complaining about neck pain. Went to a rheumatology dr who told ne ive got Fibro myalgia. Had ct scan and mri. Showed nothing my neck is not great have lordosis and arthritis but suddenly i cant walk. The pain in my ankles and knees my thighs my lower back. Been through treatment nefopam diclofenic pregablin duloxetine serotonin and now morphine. Still in pain! Went to pain clinic. Dr there basically its just fibromyalgia you just need talking therapy! Noooo i really dont nothing bad has ever happened to me. Im happily married 15 years lovely 14 year old daughter. Apart from the pain im fine... Nope he cant help! I cant work as agony and on crutches to try moving. Waiting to hear from pip after taking them to a tribunal. So my only stress is money really and noone is helping with that. Still on all the meds above just removed nefopam to see if i dont need it but im 39. I can't live another 30 years in pain!

[Smoggie1 in reply to alison84230]

Yes I know exactly what you mean I've been offered the same..I've been offered a talk over phone with one of pain clinic women as seminars are not available due to covid..I told him that will not help me. I don't do meditation or talking..I used to swim and that helped but then would have to go to bed but when pain keeps waking you up it is no good amytrypline is helping a bit..I'm nearly 60 and last year been absolutely hell with fibromyalgia.my sister is on LDN through private prescription I am gonna ask about it when I speak to rheumatologist... She says it has helped her alot

[ChristCornHell in reply to alison84230]

Oh that really hurts me. (pun intentional) It has reminded me of how bad my neck can get (I also get lock jaw) we used to joke about HBN as kids... (Head Bangers Neck) but that is what it's like at times. A lot of things in the last 24 hrs have shocked and surprised me. For you to have no trauma and having to raise a 14 year old and be told your reason for not working is not valid saddens me. It doesn't surprise me, but to imply the pain is not real is so bad. If I could give my pain to a Dr or Medical advisor and say this is how it feels... Give it back once you have decided what kind of pain I have. Just to see that look of horror on their face would make me willing to accept the pain back. I would be tempted to leave it with them but I would be grateful for the 1 minute or so of relief and knowing that they would put more effort into helping us. I hope you have plenty of advice for your pip hearing. I really need to find out more about this whole illness.

[Midori in reply to ChristCornHell]

Well said! But I wouldn't say stubbornness was you worst trait, it is probably your best, because like me you will keep at it and fight for yourself, against both doctors and your own body.

Keep going, fellow Fibro Warrior!

Cheers, Midori

[Al10 in reply to ChristCornHell]

Are folks watching with interest those who are reporting what some are now calling Long Covid? The first of these have been told by their drs, you didn't have Covid. You are better now (to those that did have it diagnosed) You are making up feeling poorly and unable to work months after what was really a light Covid flu. And on and on. In other words, you get sick, you recover. No Nonsense. No silly malingering.

yet again Drs Gaslighting patients instead of listening, taking notes and asking other drs if these symptoms are happening else where. And then, what should they be doing to HELP?

These patients may be telling us stuff they didn't know about Covid, but more tellingly it tells us heaps about how Drs as a whole, think of their patients and how they treat them.

Patients dont tell the truth. Are stupid... Etc.

A supposedly new virus. The Drs are still learning but if patients report long lasting fatigue, aches, pains, tummy issues, inability to recover, NO that is not COVID.

Very very interesting.

[Sosbach in reply to Al10]

Post viral mysteries, our very DNA changes, somethings get switched on, the virus becomes part of us. They are starting to understand this. But there are bad doctors just like there are bad mechanics.

[Al10 in reply to Sosbach]

Too common?

[Sosbach in reply to Al10]

..it feels like that sometimes, not to mention on this forum...

Then again I’ve known a few bum-mechanics 😕

[Al10 in reply to Sosbach]

Makes us appreciate the good ones hey?

[Boyboy15]

Hope your doing ok?

I’m in recovery and have struggled with the pain as I don’t want to get addicted with the pregablin & diazpam. This seems to be the only thing that everybody takes.

And I’m not chucking 6 years of sobriety down the drain. My recovery means everything to me.

Hope you have a good support network around you.

Always here if you want to talk

[ChristCornHell in reply to Boyboy15]

Thanks man... I know the diazepam would have also helped but alas that was my original drug of choice which led to Heroin. I have a few close friends and was doing SMART recovery. The whole lock down has been difficult for everyone. I think that bottling up my feelings is my downfall.. The occasional rant helps. I am returning to college soon and need to up my exercise routine to get rid of my covid tummy. Any tips on pain management are greatly appreciated. Please share anything that may help me or anyone.

[Boyboy15 in reply to ChristCornHell]

I just keep it in the day mate as you well know.

Have to keep the head strong & relies that the painkillers are for my physical pain not my mental pain.

Only another addict would understand that. I only take amatripzine as there an anti depressant & help me sleep.

If I can get a decent nights sleep I’m in with a chance for the next 24 hours, it’s all we have.

The doctor referred me to a private clinic who said it’s all about your diet & to be fare Iv got to agree.

I’m gluten free & dairy free. No caffeine or red meat. And I take a lot of supplements.

Magnesium, tumerick, COD liver oil, probiotics, multi vitamin. They all help me.

I bought a wobble machine. It really helps wake up my body in the mornings. Gets me stimulated & it’s easy exercise.

And the sugar is the devil lol. But as you know eating is part of an addicts life as well.

It’s all just a massive turnaround. I just keep it in the day. I’m so glad there’s someone else on here who understands the same situation I’m in.

I did post something on here a while back but I don’t think anyone could really relate.

I wish you well on journey & im always here to talk 😊

[ChristCornHell in reply to Boyboy15]

Will do. Strange you mention sugar. Never liked sweet things until errrrr 4 yrs ago. This is the one I use to fix my feelings. Ice cream fixes everything.... Except my recent weight gain. Pop (2ltr a day... Is a necessity now) I know life is about balance, more so with addictive behaviour. Containing my frustration has never served me well. The wobble machine makes sense.. So much less harmful than my limited option of old. Pain management appointment, cbt appointment booked now I think a counselor and dietician are both needed. Letting off steam is priceless.

[ChristCornHell]

Help us heal

[Hidden]

Doctors are nothing but ignorant on this subject on purpose! It’s meant to wind us up! All I’ve had is complete and utter ignorance from every Doctor except my last GP for 18 years. He’s retired now!

The worst was a Doctor at Heath Hospital Cardiff, who was specialising in Fibromyalgia. We had a chat... and that was it! Haha! It’s just a way to get research money for his research.

The other Doctor whom had some sympathetic tendency was when I first got dx. He has ME. Last time I saw him was in 2015. He didn’t make much sense repeating complications, complications several times. He clearly tried everything to repair himself. Sadly failing. He was a very well respected Doctor and later found I was actually related to him. Poor guy!

[Ninapod]

I've just had to look up TMJ and realise that I have had this! I am lucky in that I don't seem to have continuous pain everywhere but suffer from a particular pain which seems to go away and then is replaced by something else. I had TMJ several years ago - the doctor said it was caused by stress - no treatment suggested or given! This disappeared as suddenly as it came but then I had severe leg and hip pain. This went away and was replaced with a really sore coccyx - this had me in tears with pain and I just could not sit down for more than 5 minutes. All of this has been going on for 15+ years. Finally diagnosed with fibromyalgia just as we went into lockdown. Still waiting to actually SEE my doctor to discuss and appointment with neurologist. When I see posts here, I don't hold out much hope for any answers ...

I am trying to stay positive - thanks to everyone who replied last week when I was feeling rubbish. I stopped taking amitriptyline whilst on holiday - came home on Saturday after having a lovely time but could not get out of bed on Sunday due to horrendous headache - I think I must have overdone it on holiday - lots of walking (up and down hills) - at least 16000 + steps per day. Thank goodness for this site!

[Sosbach in reply to Ninapod]

Don’t lose hope ninapod, with regards to things getting better. They can. While there is no magic cure, you can learn to manage the symptoms well and become mentally stronger in the process. But it is a process. There’s nothing in life that you can’t end up finding a gift if you’re open to it. in many ways i’m better person because of having undergone the process of learning to live with this thing.

[izzykirk3]

I suffered for 9 years, thinking I was going mad before my GP decided to send me to a specialist who spoke to me for minutes before telling me I had Fibro and there was nothing they could do. That was 15 years ago and it still hasn't gone away, I have just learned to live with it and continued to work as a secretary until I retired 8 years ago. stress certainly makes it worse so you need to look after yourself and dont let people force you into doing things you dont want to do. Its ok to say NO.

[Kitten-whiskers]

I am so sorry they missed your illness for all that time.

Best of luck to you, I think sadly you will need it. Doctors missed endless issues with me for many many years, by the time they actually picked up on something - they made the situation 100 times worse and nearly finished me off completely. If I had not have taken matters into my own hands I would not be here now.

You seem to be doing really well with your frame of mind

Take care

Debs