3:30...my new daily wake up time. It doesn't matter if I go to bed early or try to stay up late. 3:30 rolls around, I am wracked with pain from head to toe and I have no choice but to get up and move my body.
Sometimes I put on my headphones and dance like nobody's business. It's very free-ing and helps me loosen up, although it does nothing for my physical pain.
I am seeing my primary care doctor on Oct.1 I have had enough and I am asking for pain management. I have been off opioids since last February/March [I was forced to detox at home without medical intervention] Due to the opioid crisis in the US doctors have stopped prescribing pain medication, even to some cancer patients! But it is not fair to those of us dealing with chronic widespread pain, we did not choose this illness, we need help!
I would think from a doctor's perspective that a patient like myself presenting with end stage cirrhosis with ascites, stage 4 renal disease, COPD and fibromyalgia with rheumatoid arthritis would certainly qualify for pain management. If he says NO to me I might just break down and cry in front of him. I cannot stand this pain any longer.
Thank you all for allowing me to vent, you always listen and you are so kind with thoughts, prayers and words. I love you guys.
Peace ✌✌ & Love ❤💕❤,
Sharon
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Cape_Cod_Sharon
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I really feel for you, I too have many conditions which cause me pain. I've been to two lots of pain management who were useless. The third one I went to was much better. He has referred me to consultant for injections. I am seeing another one on Monday for gastro /liver , to hopefully have injections.
I have
IBS
Diverticulitis
Gastritis
Costochondritis
Under active thyroid
Nash (non alcoholic steatohepititis caused by meds from my Drs over the years)
Degeneration of the facet joint
Spondylitis
OA in n knees
Fibro
Depression
I think that's it!!
You can pm me anytime , I usually get an hour or less sleep per night, been going on for 5 years!!
Hope you start to feel better soon. And yes, burst into tears,he might actually listen to you then. Love and hugs Lynne xxxx
Hi cc-Sharon, I am so sorry to hear of all that life has thrown on to you, yet, here you stand. That says alot about you as a strong person, and all that your mind, and body are capable of taking. My prayers are going out to you, that the good lord will help those doctors to truly see you, and to hear you, Doctors need to trust, and to listen to there patients instincts better> They need to be reminded that we are all human beings, and if they were in your shoes, or many of ours, what would they do , as doctors with "oaths" to not let suffrage be the forefront of healthcare. Many of us here suffer in so many ways, like grains of sand, to many to count. The light at the end of the tunnel here is, at least we listen to one another, have kind words of hope, and uplifting words to share. As for the way you feel, write it all down, document everyday that leads up to that Doctor appointment, and take pictures of any symptoms you can, cry for you need to, look them straight in the eyes, and say, my hands are tied as I am only the patient in dire need of your care, and relief. Be honest, be proactive, be upfront, be kind and direct, let them know what you have tried to do to help your suffering. Then document the Doctors responses, recommendations dates, time ect. That way you have a time line when you need to return to them, and you can show proof of your visit. Do not let them help you feel powerless, There are ways for Doctors to help you, and Charities over there that can step in and help support you on this journey. I am unfortunately in the US, so I know all to well this puzzle you face. I could tell you more, but this post is for you, we support, and care about you, many of us do. I.. send you my dear prayers, peace, blessings. thestorm🤗
Go straight to have it overruled by another practice doctor. Medical ombudsman online or visit your walk in centre and tell them your not leaving without pain relief it's breach against your humane rights. Yes 3.30 on dot.
So sorry to hear of all your aches pains and yes we all have the same pain in a different round about I waken up at 4.30 every morning and like you have to get up to get the body going but sadly no dancing just sit in chair and fall asleep so why can't i sleep to a reasonable time so go to your doctor a politely ask him for pain management you can always see a different doctorbut if not try the crying you just never know he might say yes hugs to you and all the rest of gang x
Sooo sorry you can’t get any pain meds. Like you said considering your advanced conditions the pain is excruciating and you should be allowed a quality of life.
Have you asked your specialists to speak to your pharmacy/insurance with special consideration proof of diagnoses and documentation to warrant pain meds for you???
There are legal aid attorneys that are patient advocates maybe they could help obtain meds for you.
Someone has to be able to help you endure this.
I know if nothing else take your story to the local news station. They deal with human interest stories all the time. Because of your situation I know that others I’m the US are finding themselves in a similar situation too.
I just said a special prayer 🙏 for you sweetie.
Please take care dear Sharon. You can PM me for more private chat or here anytime. I’d love to chat with you. By the way you aren’t venting you’re telling you’re truth.
Hello there, sorry to read of your broken sleep, yes a lot has been printed here in the newspaper s , I think it’s awful just to try stop pain meds for people who genuinely need them, i hope something can be sorted Sharon sending hugs xxx
The current situation seems to have been thrown together without thought of the real impact it will have on the lives of many in chronic pain.
It seems more from a Dr's standpoint of fear of being sued but where is the compassion,, where is the care.
Having worked in a vetinary practice for many years it was always of primary importance that suffering was minimised in the least harmfull but effective way and when that was not possible it was the end of the road.
I really don't know what is to be done but the situation that has been created at present is unaceptable.
As your in the USA are you in a state where you could perhaps access a Cannibis for pain.
I have heard that the prices of the stuff is a kings randsom plus 50%.
There seems to be as much compassion in the ecconomic system today as there is in the current medical system.
I was reading of a charity in California that was giving canibis to terminaly ill people who could not afford to pay for it. Not only were they living way beyond any medical predictions but getting better.
Strangely the goverment have now hit the charity with a bill for tax on the cannibis that it is giving out for free!
Good lord,,, where is the compassion,, where is the humanity or feeling for human suffering.
Ray
P.S. Just reading this in the New York Times on the whole: Surpirse Medical Billing attrocity.
Good morning Sharon 🤗 is there any particular reason you have been given for not getting medication. Could it be because of your liver problem maybe? Or is it something to do with your medical insurance cover?
It's horrible to hear how people suffer for the lack of funds for treatment I feel for you.
In part it is difficult to know what medications can be harmful to the liver and/or kidneys, so it is left to me to coordinate the liver specialist with the kidney specialist with the primary care doctor with the neurologist with the rheumatologist....so they can brainstorm and come up with an acceptable form of treatment.
[They can call my gynecologist if it helps!!LOL]
Many drugs can build up to toxic levels in a poorly functioning liver, others can cause kidney damage, ulcers, etc.
Thank you for your reply Sharon, yes I can see how difficult it must be for you medication wise. You have such a lot to deal with. But still your sense of humour shines through that's good to see 🤗🤗
Yep the "early" morning wake up call! Grrr no i don't want to be awake at 3,3.30.4.4.30.5.530.6!!!! or any other time in between or like a snooze function either.
This week it's hardly sleeping/staying a sleep week so far which then ends in all sorts of issues as all adds up but funny my feet don't hurt too much either and breathing is a lot better!
But guess it will get bored doing something then come and have a go at me again?
Seems like a sort of cyclic thing bit like the planets aligning then mayhem starts?
I am sorry to hear you are in pain. Sadly there seems to be a wide difference to what health professionals deem to be pain management. My wife went on on last year. She was taught various techniques to help better manage the pain. Pacing, goal setting etc. She was also given basic stretching and strengthening exercises to do at a base line level to gradually build up on. They also looked at her pain meds and changed them to a long acting patch which actually increased the dose. There was also a plan made for breakthrough pain. I am now on the same course and they have already indicated they want to up my medications. Pain management programmes differs from other treatments in pain clinics in that pain relief is not the primary goal. (Taken from the British Pain Society Guidelines for Adult pain management programmes). In reality the aim of a pain management programmes is to reduce the disability and distress caused by persistent pain by teaching physical, psychological and practical techniques to try and improve quality of life. Yes they look at medications but look at other means first.
I was speaking with my sister in law yesterday in Boston she was telling me that MA residents could now grow 12 Cannibis plants legaly.
I was then reading just today in the national pain report "a survey of more than 1,300 fibromyalgia patients by the National Pain Foundation and National Pain Report found medical marijuana is more effective than Lyrica, Cymbalta or Savella, the three drugs approved by the Food and Drug Administration to treat the disorder" That way you would be free and clear of the blood sucking Drs that think the know best.
I can send you a link to it if you want,,, but concidering it is now legal there I would be out diging in the dirt to ease my pain !
In fact I'll just send you the link anyway and you can read for yourself, if you want !
It is something that I have been reading alot on of late and the situation is rediculous.
There is so much infomation of the benifits for fibro sufferes but the list and potential seems unlimited. As the artical I sent will show,, 1500 people in the study.
Sadly I live in the UK and the only choice one has here is to go to the street and take what you get,,, and most of that is not going to be effective for pain.
I really do not know why govenments are draging there heels and holding people to living in pain that could be more effectively and without the Hepatic and Renal problems that the current drugs are causing.
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