ARE WE ALL "JUNKIES": Yes. I was... - Fibromyalgia Acti...

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ARE WE ALL "JUNKIES"

golly123 profile image
37 Replies

Yes. I was thinking about this really. Am I now a "Junkie". I guess so, but not by choice. Controlled drugs - yep I had to sign a form for pregabalin. I'm also on Nefopam too. An addict essentially but not by choice. Do I feel "normal" now. No I don't. I feel fogged actually. Do these two drugs KILL ALL THE PAIN? Nope, they don't. They just numb it a bit for me anyway.

How about anyone else? How do you feel? Best wishes to everyone. I'd like to thank everyone who responded to my PIP rant. How lovely of all of you to be so kind and caring too. Thanks Golly x

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37 Replies
JoseT profile image
JoseT

statistically pregabalin and lyrica only works for 20% of the fibro patients and come always with the high price of the side effects and undesirable addiction.

Braing fog is one of the known side effects of pregabalin.

There is no one single medication in the market targeted exclusively for fibro-patients (except savella but is only available in the US). An anti-seizure medicine as pregabalin shouldnt be in my view the first choice for a fibro patient.

Can't you not ask for Low Dose Naxeltrone instead? This one has shown good results for chronic pain.

I personally dont take any pain medication but i also started my journey with lyrica and the side effects were just horrible.

Good luck x

Sparklingsunshine profile image
Sparklingsunshine in reply to JoseT

Agreed, I took one dose and had terrible stomach pain and the trots. I've never got on with any of the standard Fibro meds. I'm looking into LDN but its hard to get hold of unless you go private. Its not widely available on NHS as its an "off label" medication.

desquinn profile image
desquinnPartner in reply to Sparklingsunshine

I am not aware of anyone getting an NHS prescription for LDN for chronic pain. Dicksons in Glasgow or others through a private prescription is the normal route. Same variability in results as other options. Works for some. Hoping ongoing study will produce clearer results.

desquinn profile image
desquinnPartner in reply to JoseT

Not sure of the statistics you are referencing as I am aware of 30 -40% and perhaps higher figures in the NTT stats from the trials as well. Also, not everyone gets bad side effects, or indeed side effects at all as you would find if you read the advice labels and their figures per population sizes. And not everyone has addiction with them or indeed not everyone has dependence either but dependence due to their ability to help is a different thing.

There are three meds available for fibro as per the FDA and milnacipran is used outside of the US but is not licensed in the EU. These meds do not tend to be first line options and have seldom been use as the first options. normal pain killers, lifestyle adaptations and amitriptyline are much earlier interventions since at least 2000 and now.

LDN has less good evidence for chronic pain than the others IMO and is not indicated in fibro beyond the as yet unreplicated studies by J Young et al but does seem to work for some and tends to have no bad side effects beyond colourful dreams.

sorry for the line-by-line rebuttal but you are apparently stating opinions as facts. Its okay to be anti-medications but balance is required. Just as one example we have our administrator in the office as a person who credits pregabalin as one of the main reasons she was able to return to working once more.

Much better if you can do without them but for some, they are beneficial and life changing.

JoseT profile image
JoseT in reply to desquinn

You are right, the side effects are not always there. Sorry for saying that. I also meant there is a risk for addiction when taking this particular medication. Statistically i still recall to read that low percentage but i would need to find the exact reference. In any case my main point is to say that i am well aware of many people taking pregabalin without any pain benefit and the doctors keep increasing their daily dose which will obviously increase their chances of addiction and their withdrawal will become then much harder. This is very well known fact.

There are three medications approved by the FDA but as far as i know only milnacipran was designed from beginning for fibro patients among other target population.

By the way FDA also approved recently a non-medication treatment for fibromyalgia,the NeuroMetrix's wearable neuromodulator Quell which is provided now only under doctor prescription. In my humble opinion it is probably much better approach than jumping to an anti-seizure drug from the very beginning.

LDN requires further studies but when searching for instance posts in this forum most of the fibro warriors reported a significant improvement in their lives, so it probably works better and comes without the risk of addiction as it is a very low dose. We have to wait and see but it looks very promising.

Of course if pregabalin works for some people, go ahead. I just wanted to share my personal experience and in my view the side effects of these drugs can potentially be really challenging so i dont really understand why not to try some natural remedies, chiropractic treatment and regular exercise first, among other alternative choices.

Thank you

desquinn profile image
desquinnPartner in reply to JoseT

The approval process for devices is significantly different than meds and much easier. Ultimately the best thing to be on is the thing that works for you. Our targeting of treatments is very poor due to lack of understanding of the condition and the heterogeneity of the community. If we could identify (and there is work on this) which groups, the likes of pregabalin would not / or would work in then the efficacy figures would change significantly.

LDN posts on here from memory are still variable but certainly not representative. It is harder to obtain due to its lack of evidence. It is "safer" due to its other use in normal dosages, so it is well understood but I do not know if it has a lot of longitudinal data for long term applications. However, while addiction should not be an issue it could still have dependence if it is working for people.

There is evidence for increasing activity but less so for natural remedies and chiropractic interventions. And these are not without risk of harm either. Broken necks* and adverse reactions are present respectively however low those risks are.

The medications we are talking about are not first line options and now within the UK they are less likely to be second line options and a challenge even at pain clinics. It depends on your GP and their confidence level or knowledge.

* nhs.uk/conditions/chiroprac... - does not cite broken necks but has happened.

I used to take slow release morpine, Zomorph, for pain. Due to allegies I'm quite limited as to pain relief options.All NSAIDS are out as I had an anaphylactic reaction to one. I've never been able to tolerate Pregablin, Gabapentin or the usual suspects like Duloxetine orAmytriptyline.

So I ended up on morphine. However I came across an old consultant letter from 2015 the other day and even then I was questioning whether it was helping. The evidence for opiates helping Fibro pain or indeed chronic pain of all kinds is very sketchy and unconvincing. And of course they are highly addictive.

I did wean myself off of them shortly after that letter was written. It was tough but I did it slowly. My pain is manageable and I'm not taking any prescription meds for Fibro now. If its bad I use otc painkillers and I use things like a massage gun, hot water bottle and CBD oil.

I'm also looking into low dose Naltrexone. But I'm aware that many Fibro sufferers have far more pain than I do. For me the side effects of many Fibro meds are worse than the problem they're supposed to treat😒

desquinn profile image
desquinnPartner

Its a really stark opinion to take and very pejorative language use. Being dependant on medication to maintain or improve quality of life does not make you an addict and certainly not a "junkie". I am sure that you are not intending to paint all those who are existing or living their life as best they can with the aid of medication.

It's like calling someone taking chemo or an insulin dependent diabetic a junkie for continuing to live while on their essential medication.

I take a very small dose of tramadol and my blood pressure tablets every day. Without them I would be useless and most likely eventually dead. I have never and do not consider myself a junkie.

If your medications are not working for you then I would suggest that you go to your GP for a review and see if something else is available. If you can increase activity levels or seek CBT then this can also be of help.

Painny profile image
Painny

I listened to two YouTubers doctors advocating that people with chronic pain are better off not taking any medications. I don’t take any drugs for fibromyalgia as I’m aware of the side effects, but I definitely know why some people are keen to take it.

Have you thought of doing things outside of medications such various therapies?

Best wishes

Sparklingsunshine profile image
Sparklingsunshine in reply to Painny

I'm the same, I realised about 7 years ago that strong opiates werent really controlling my pain and probably never had but when the pain is severe, relentless and long-term then you'll pretty much take whatever you're offered. My issue is there isnt much help available for chronic pain conditions in the UK.

There are long waits often for physiotherapy and pain clinics. My consultant at my pain clinic pretty much gave up on me. In my experience they are good if you have a bad back or painful knee or pain in a specific area but for whole body pain they were pretty useless. I tried TENS, steroid injections, acupuncture, which was relaxing but did diddly squat for the pain. I stopped going as I felt I was wasting both our times.

I know CBT can be offered to help deal with chronic pain which is meant to help I believe and of course exercise is very good, if you can manage it.

Painny profile image
Painny in reply to Sparklingsunshine

so true…because pain is not tangible and is not shown on MRI we are ignored. Wishing you some relief

CM1EDSUK profile image
CM1EDSUK

I'm surprised you're questioning being a 'junkie,' or addict. Many people depend upon a med prescribed by one of their Drs.

As mentioned, not everyone has side effects from a prescribed med. Personally I didn't tolerate Gabapentin at all well, but have found Pregabalin (which can have the same effect in reducing pain, but as this can be taken at a much lower dosage, fewer side effects) helpful over the past decade ( & no weight gain at all).

Des makes me shudder with the thought of tramadol, as, after just 2 tablets I had the most awful hallucinations that night, so never again. However, this again just shows we're all different as to whether a med may be helpful, 'may' have side effects, or may indeed be beneficial.

However, that's my personal, anecdotal 'evidence,' so not much use at all. What is done to try & help is looking at the medical evidence over the years. Therein lies the problem in part; fibromyalgia isn't always best described, & some studies will not have been included as it has been difficult to decide what constitutes fibromyalgia, the symptoms of which can also mimic other disorders.

Playing Devil's advocate, when I was researching the problems our family had (not fibro), there was just about no evidence in the medical literature. I got in touch with a Dr in the USA, which was in part serendipity..... I was sure that our family had not one, but 2 disorders, which had to be associated; this solitary neurosurgeon felt the same as he'd noticed some patients he had had both disorders. Condiments, it certainly took time to raise awareness here in the UK, but now in the USA it's widely discussed. Just trying to say it can unfortunately take time to get some disorders better understood.

As with fibro, I feel some of our UK specialists are at the supposed 'pinnacle' with their knowledge, but if this is what they learnt many years ago, & they don't keep updated it won't necessarily help.

I do appreciate much of what has been said; certainly that opiates may help with acute, but not chronic/persistent pain, so we need to look at alternatives including some meds, gentle exercise, pacing, distraction, visualisations, etc.

desquinn profile image
desquinnPartner in reply to CM1EDSUK

There is a lot of good evidence beyond just the opioid effects for tramadol in fibro with its serotonin benefits. Recent guidance from NICE did not even consider the studies when making their guidance even with us, Cochrane and many more complaining about their logic.

I can get away with lets say 8 - 10 tablets a week with most days being 7 so it works and is low risk for me. I consider making a step to reduce / remove given the way the wind is blowing but the regime works for me.

20JD profile image
20JD

Junkies my cousin was a heroin addict I would class that as a junkie sadly no longer with us...junkies will take anything they can get there hands on drugs,cash,shoplift, to feed their illness,,

Sulcata-ca profile image
Sulcata-ca

I understand how you feel. It’s very worrying taking addictive meds or ones with such worrying side effects.

I’m just on Cymbalta and apparently it causes dementia in the long run. On most days it’s a help and I can have a normal day but during a flare it feels like nothing will stop the pain so I end up popping 2 panadol extras every 5/6 hours to try and function semi-normally. Someone I know just passed away because they were having similar amounts of Panadol and it caused liver failure.

I worry about all the side effects and if I am doing the right thing being on this drug that impacts how my brain functions. It’s hard to trust doctors after over a decade of being misdiagnosed and it’s just generally hard to trust pharmaceutical companies these days.

I’m going to start counselling because I’m not sure I’m dealing with the ramifications of having an illness that is chronic and also that is so misunderstood. I watched a talk by Dr Mate Gabor and it has made me wonder if just tackling this as a physical problem is a wise idea on my part.

desquinn profile image
desquinnPartner in reply to Sulcata-ca

"Apparently it causes dementia in the long run" I think you mean it increases the risk factor but by how much some antidepressants do this is unclear. Measuring risk is challenging with avoiding the potential risk but getting hit with the more likely consequence always a question of balance.

Ani7 profile image
Ani7

non of them working, I give up, accept apply cream and live my life day by day. I also take co-codamol and omeprazole.

golly123 profile image
golly123 in reply to Ani7

Co-codamol is the best pain killer in my opinion. I think it's a question of what works for the individual. I'd like to come off all meds and try to just be me. I do feel fogged out. Thanks for responding. Really lovely of you. Best wishes Golly

Painny profile image
Painny in reply to golly123

I wish I could use co-codamol, tried ver severe reaction. I have also vertigo and I was told not to touch this drug 🙈

desquinn profile image
desquinnPartner in reply to golly123

Painny codeine does not work in upto a 1/3 of the population as they do not have the genetics to make it work. This could explain why it is of no use for some.

golly123 profile image
golly123 in reply to desquinn

Hi. That's a very good point. The pain clinic said that pregabalin only works for some people as well. All morphine seemed to do with me was make me itch and cause a rash. Thanks

Alltheflowers profile image
Alltheflowers

We're all different - some of us can get through without meds and some can't. I've tried many meds over the years that didn't work and now take a low dose that seems to be working okay at the moment. Basically, we all need to do what's right for ourselves - fibro is hard enough without beating ourselves up about taking meds.

Blearyeyed profile image
Blearyeyed

No person whom needs to rely on medication to help a health problem is , or should be considered to be , a "Junkie". No person with genuine health needs whom takes control of their Medication use us an Addict.

Although , I'm sure there are many forum users whom , at times , when they first began using medication to help their symptoms , had thoughts similar to yourself. Especially in the early days , when they may not have had to use medication before and they were still getting used to the " New Normal" with Fibro.

It can be hard at first to reach a point of Acceptance when you get a diagnosis and start to begin medication regime's to help. One of the hardest things many people find to accept with any Chronic Illness is having to take strong medications , sometimes for life , in order to manage their condition and get back some quality of life.

It can be especially hard when you are surrounded by people , both strangers and friends, whom might see you with your " invisible illness" looking otherwise" healthy " but taking medication. Funny looks or silly comments don't help , especially if we still feel a bit uncomfortable about having to take painkillers or other meds to get through an average Fibro Day.

Yet , when we have Fibro , we have to be proactive in keeping the system going.

We do need to use good Self Care in the forms of Diet, Pacing our Day , Working out our triggers and avoiding them , Moderate Exercise and Rest and Relaxation.

But , even when we get the best Self Care programme in place for our individual needs most of us still need the last piece of the Self Care jigsaw puzzle , Managed Medication.

Without it , very few of us can control the swings in our pain and symptoms to achieve success in being stable or Pain Managed , as having Fibro it is all about being Pain Managed not 100% Pain Free.

It's hard to accept especially if you have always lived a healthy , holistic lifestyle . But Chronic Health issues don't care about your previous lifestyle choices or principles.

So we have to get real , we have to be honest about our illness, and swallow a big bowl of acceptance taking medication in a way we never wanted .

It doesn't mean we have failed.

It doesn't mean we have stopped being ourselves.

You are still You , You are just the You with Fibro that got practical and sensible and take medication because you need it.

Thinking of it another way .

You wouldn't call a Cardio patient a " junkie" .

You wouldn't think that of a Type 1 Diabetic , and they use syringes to medicate numerous times a day.

You wouldn't think of yourself , or your healthy friends , or well meaning , advice giving friends as " Junkies" for popping the useful supplements each day to maintain nutrition and reduce symptoms like that.

So why think it of Yourself .

You take drugs because you need to and have to , not as a mistake , from peer pressure or bad life choices. That's the big difference.

It can just take a long time to accept it , especially if you feel like you need a fork lift truck to take your medicine box down from a shelf!

morag37 profile image
morag37

Hi, i would agree due to our fibro and other issues, we can be classed as addicts, but please,please don't use the word "Junkie", i have worked with those which have substance misuse issues till recently and the one word i will not use is "Junkie" its horrible to refer to oneself or other's as this, but sadly it happens all to often. Sorry just had to say.

golly123 profile image
golly123 in reply to morag37

Hi Morag. No that's fine. I quite understand. Best wishes Golly

DodgeDhanda profile image
DodgeDhanda

Everyone in the world is a junkie but in the very broadest of meanings. There are those that are addicted to illegal drugs , legal drugs , alcohol , smoking, food, sugar & everything else in the world from gambling to baking cakes for fun everyday .

Our very dna structure means there is an addiction in us all , those of us who unfortunately rely on legal controlled drugs are victims to big pharma & those they sponsor who write us those prescriptions that keep us ill & addicted. That's the whole point of it all create addicts & keep them supplied.

Cancer is a lottery & there are drugs that help people & surgeries too & then the bodies of those who have had the cancer removed goes to work & I pray people will always win the remission battle.

Jellylegs21 profile image
Jellylegs21

TRIGGER WARNING ⚠️ FOR DRUG AND OTHER SUBSTANCE MISUSE & ADDICTION

I’m so pleased you asked this question! I honestly have been pondering this myself recently. I’m on Fentanyl 75mg transdermal patches, (they use these patches to help heroin addicts come off heroin 😬) Oramorph (basically liquid Morphine) OxyNorm which is 5mg of Oxycodone & Zapain which is 30mg Codeine 500mg Paracetamol. I take these drugs multiple times a day, per my prescriptions. Plus a ton of other medications for other Physical Conditions & for Acute Anxiety and Clinical Depression I have and supplements (just in case they might help!)

This time of year I live under a heated blanket as even with all those pain medications at my disposal. If I get cold it’s a disaster, as Fibromyalgia, Chronic Regional Pain Syndrome, Hypermobility Syndrome, Post Surgical Complications, Migraines, & Chronic Fatigue Syndrome all have symptoms & discomfort that starts to flare.

Do I feel good about taking all these opiates no?

But what’s the alternative?

CBD did nothing for me unfortunately. I bought a good brand in the highest dose we could afford which was £60.00 for 30ml. But it did absolutely nothing for me!

I’d like to try medical cannabis, but I can’t get it on prescription here in the UK 🇬🇧 And I can’t afford the prices that the private medical cannabis clinics in the UK 🇬🇧 are charging for it. And I wonder if it’s even technically legal.

Being totally honest, I’ve contemplated buying some weed of the local drug supplier. But I’m not someone who takes risks in that way. I’d probably be caught first time I tried. But the pain relief, anxiety zapping, euphoric feeling, and ease of going to sleep really interest me. I know it gets mixed with other stuff on the streets & you can probably tell, I’m not street or illegal drugs wise. Probably just as well. Because some days I feel that desperate to have some other form of relief.

So that’s my thoughts.

Do I feel like a drug addict, absolutely I do.

I have 26 prescription drugs on repeat prescription.

Of course I’m addicted. Who do I blame? The NHS? Or me for taking them? The NHS isn’t making me take them. But I can’t live without the pain medications without a reliable medical alternative.

My friends are raising money for me to go to a clinic in the USA 🇺🇸 where they do treat Fibromyalgia and Chronic Regional Pain Syndrome and everything else I am suffering from. As far as I know it’s the only place in the western world that treats these conditions. The treat people holistically and they reset your central nervous system. Which is what is believed to be the reason for Chronic Pain receptors in the brain going wild. My friend went 3 summers ago and is now off all pain medications and able to get on with her life.

I don’t know whether I can mention the clinic I’m talking about. But I’m confessing being a drug addict today. So let’s try it, the powers that be can always take my post down. Plus I’ve now got brain fog and can’t remember the rules for the group. Sorry if this isn’t allowed, but it could give a lot of people some much needed hope….

thesperoclinic.com look at Dr Katinka and see what she has developed. The clinic is in Arkansas USA 🇺🇸

DodgeDhanda profile image
DodgeDhanda in reply to Jellylegs21

Hi JL21.

I just finished what U wrote about the meds U take .

I take Zomorph 70mg twice a day & have been for several years amongst other medication too.

Anyway the pharmacist that works at my surgery gives me a call about taking me off zomorph to which I think I may have screamed no at her but I had to admit that as an opioid I'm addicted to them & I asked if there was an alternative to the zomorph & she mentioned fentynl patches but as of doses I'm not sure but I will be having a telephone consult with my GP next month.

Now to the crux , how effective are these patches are they better than the capsules or any other pain meds U use ? Is it a scary thing switching over , did or does it work for urself ? Any facts or issues U've come across would be much appreciated. As ur the 1st person I know that uses the patches actually talk about them.

Jellylegs21 profile image
Jellylegs21 in reply to DodgeDhanda

I hear you Dodge, I was very sceptical about changing to Fentanyl patches. Like you opioids in my opinion were/and continue to help manage the chronic pain conditions that I suffer with.

This pain was not a low grade pain, I felt like I’d been hit by a truck everyday. I could barely move. I just stayed in bed. Every muscle and joint ached. I could hardly lift my head off the pillow, my head felt too heavy, and the pain in my neck and shoulders was overwhelming. The kind of pain that makes you want to cry out in pain all day long. And some days I’d try not to move a muscle. I wasn’t living I was just existing.

Then following an emergency abdominal laparotomy surgery. To remove a 5cm cyst off my right ovary. I couldn’t get out the hospital bed for 10 days. Opiates were then first introduced to me. And slowly I began working with my GP to get the doses right to feel less pain.

Liquid Morphine, helped the surgical pain in my scar covered ovaries and bowels. But didn’t touch the Fibromyalgia & Chronic Regional Pain Syndrome. Oxycodone was what first worked with that run over by a truck pain that I had everyday.

However it eventually became clear that due to the post surgical complications, I had to work with Gastroenterologists. And we discovered that hard tablets or modified relief drugs. Were going straight through my system. Due to the amount of laxities and bowel stimulants that I was now having to take as well.

When they started talking to me about trying Fentanyl Transdermal Patches, I was sceptical. What if I said yes and they took my Morphine and Oxycodone away? Would I go back to feeling like I’d been hit by a truck again.

My GP surgery, had employed some Pharmaceutical trained nurses, to work with patients that were using long term drugs, that actually weren’t working as well as they could. That nurse suggested the Transdermal Fentanyl Patches. I agreed to try, if I could still keep my other opiates at hand, in case they didn’t work.

I spoke to that nurse daily as I changed to the patches, I described how much pain I was still in and where. I told her how much top up I was needing from Morphine or Oxycodone.

I think I started on 25mg Transdermal Fentanyl Patches, there was some weeks off increased pain, and I’d be in tears to the nurse. But she listened and cared, she spoke to my GP and we increased the patch to 50mg. This was better, but I still had a lot of residual pain from the surgical complications and flare ups from the Chronic Pain Conditions. She then spoke to my GP again and he agreed to increase it to 75mg. Now I was feeling like my pain was being managed. I could get out of bed without wincing all the way to the loo. And what was great was the Fentanyl Patches were providing continuous pain relief. No need to keep setting a timer for every four hours. This patch was delivering pain medications into my system 24 hours a day and night. It was simple, change the patch every three days. I had a few issues with the patches coming off my skin before 3 days. So we played around with, sharing hair of the area you are applying the patch to go. It needs to be on your upper body, arms, back, or front. We played round with using alcohol wipes to try and make sure the skin was clean, and all the oils in the skin were removed. And we also applied surgical style adhesive dressings over the patches, to try and keep them on for the full 3 days. So for me it was a bit of a challenge keeping the patch on for 3 days. But there was no way I was going to give up my 24 hour pain medication, in the form of Fentanyl Transdermal Patches.

I’m working all the time on trying to reduce the doses of extra Oramorph and Oxycodone. And there’s days I don’t take any. And there’s days when I’ve had other medical procedures, and the pain has flared so I take what I need. Days where I’ve managed to go out and do something, so the next day I need my top up doses, as I’ve pushed my body further than perhaps it can take. I also have Chronic Fatigue Syndrome, I don’t normally sleep in the day, but the Fatigue is what stops me going out very often now, not so much the pain.

So I would say try them Dodge, work with your primary care physician…. I so hope that they will be as transformative for you in your pain, as they have been for me. And feel free to message me if you have any other questions about Fentanyl.

Before I sign off on this, I will say that I do worry about the long term effect of being long term on opioids. And many, many other medications. Will it shorten my life? Will I kill my liver or my kidneys? I don’t know.

But I’m looking at alternatives as I said in my last post, I will be detoxing off of many of these medications before I go to America 🇺🇸 to a Chronic Pain Treatment Centre. Who have an incredible success rate of rehabilitating Chronic Pain Conditions. My friends are busy raising the money…. And I know they will do it because they want me to be able to live, not just exist.

All the best Dodge. Let me know how you get on. 🙂🙃

DodgeDhanda profile image
DodgeDhanda in reply to Jellylegs21

Thank U so much Jelly.Firstly for sharing & there is a lot U've gone through that I did too bar ovaries. I suffered from diverticulitis & part of my large bowel had to be removed due to the fact it perforated & due to complications I ended up getting an infection in the O.R. & had to be taken out of the o.r. & into intensive care & then they took me back into theatre the following day to finish off but had to leave the wound open as the infection was still there & I ended up spending 10 months in hospital , I did go home but got sepsis & ended up in hospital in Oxford & years down the line the scar tissue prevents me from sitting correctly or I want to heave so I had to adjust the way I sat down & ended up with chronic pain in my lower back & it got worse over the years now I can't walk without my crutches & am too vain to use my wheelchair on my bad days.

Again thank U so much & I wish U the very best too Jelly

Jellylegs21 profile image
Jellylegs21

Wow 🤩 Dodge, you have survived an enormous amount of surgical trauma.

I’m so sorry you had to go through all that.

Yep. I need to use my wheelchair at the moment. It doesn’t feel good. But I did get to do something nice with my husband and daughters on Saturday. All I’ve been going out for was surgical appointments and procedures. So it felt good to be out with them. Even if I was in my wheelchair. Some times we need it, no one knows the trauma you’ve been through. You’re brave Dodge every time you go out your house.

With your bowel complications I’m so hopeful that Fentanyl Transdermal Patches could be a life changer for you, in managing your pain more effectively.

Go Dodge, use the meds to go be the Warrior that you are.

And please let me know how you get on. I’d really like to know. All the best. 🙂🙃

Fra22-57 profile image
Fra22-57

addiction definitely.Try missing a dose and that tells you how you need it.I was told to miss evening before and that morning before a colonoscopy.Severe headache n sick made me collapse in waiting room and I ended up in hospital a month.They at first thought Addison's disease but it was drug withdrawal.Terrible.Still on the pregabalin but reduced from 450 mg to 350 mg a day and that was an awful ordeal to go through

desquinn profile image
desquinnPartner in reply to Fra22-57

addiction and dependence are two different things. Dependence on insulin while diabetic would see withdrawal symptoms and then death, but you would not be considered addicted. Addiction is when you are going beyond your prescription and seeking ever more amounts beyond medical advice.

It gets more complicated when you further look at physical and psychological dependence. After drinking coffee for 20 years and using it to get up in the morning it becomes part of your routine and your body is used to it and dependant on it. But you are not seeking out more and more and you can stop it and your body will react.

biker888 profile image
biker888

hi , prescription drugs ? though may slightly ease pain occasionally , are offset by the amount of toxins they put into the body , and toxins are a real major issue , not seen your pip gripe , just will say that I was forced to an assessment when lockdown first started , I was told that I could not use my recording equipment , assessor said that I could have another appointment and that they would use there own equipment ,I questioned that stating that I did not believe Capita supplied recording equipment , however the assessor was adamant and so I agreed to another appointment , so the assessment was adjourned , was awaiting another appointment when received a letter from DWP , turned out the assessor had completely fabricated a report , which of course gave the obligatory " zero " points ! , this was a real shocker even for Capita , took me 6 months to force it to court , my appeal was upheld , then sued Capita , got it to court via a great deal of effort and the judge "genuinely" totally protected Capita ,, truly shameless behaviour , the legal system is so corrupt !

golly123 profile image
golly123 in reply to biker888

Gosh, that's truly awful. I was re-assessed via a kind of zoom call so we could see each other. When I got the assessment back it said "there is no evidence of this", there is no evidence of this". I gave full access to my medical records which are pretty lengthy. There only way to get "evidence" is to spend a day with me. Just generally fed up. I think I upset a few with the word "junkie" really which I feel bad about. I just wish life didn't throw so many curve balls. But compared to a lot of others it's OK. Ok is about the best I can say. It could be better but it sure could be a lot worse. Good for you on fighting it. Best wishes Golly

biker888 profile image
biker888 in reply to golly123

evening Golly, the way we are treated via the benefits system is inexcusable especially by Capita who also screw the public over regarding tv licences amongst other gangster fingers in pies , they are possibly the most disliked organization in UK ,

also dont feel bad about upsetting people by what you have said , called free speech and you have thrown out a valid comment , I have questioned myself in times gone by when every so often having thrown the kitchen sink at fibro , taken lots of prescribed pills and herbals etc out of sheer desperation , makes you feel like a junkie although not actually being one of course in the real context of being a junkie,

there are some on this site it appears that just want to blow kisses and imaginary hugs to one another, thats fine , but they also seem to be keen to blow off at anyone they dont agree with and then accuse others of being bullies and unpleasant , guess its a perverse kind of inverted therapy , so its ok to explore issues and may be the boundaries of fibro in a civil fashion as well as the sympathy side .

Think a youtube channel for fibro would be a good way forward , thats a much better way too educate and raise awareness . all best , Biker

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desquinnPartner

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