There is much money in the pain and drug industry. Ethics and the recipients of these drugs do not factor into the bottom line. Profit and Loss Statements mean percentage increases at any cost. It is sad that chronic pain patients are made to feel like drug addicts and treated in a most callous way.
I had a psychologist who said, ‘people like me, were ‘CASH COWS’. At $180 a session, his treatment at times involved closing my eyes and focusing on the blue ocean. Visiting him for six weeks was a government requirement in order to access S8 pain meds. My meds cost around $400 a month. At the time Lyrica was not subsidised by the Australian Government and I was paying $140 a month. Additional costs included acupuncture, massages, GP bills and specialist bills.
Some Pain Clinics exploit vulnerable patients. A clinic I attended introduced laser therapy, with scented candles. I was attended by a sweet lady who had no idea how to use the laser. Cost another $80. The exercise was two years too late because by the time some doctor thought that perhaps this woman was truly incapacitated with pain, I had progressed from acute to chronic pain.
I attended this clinic since 2005. The pain specialist decided to introduce a course for chronic pain patients. It was now 2011. Before being treated by him you were required to attend a daily course on Chronic Pain, $300 and no rebates. The presenter was not a medical professional but a pain sufferer.
For the first two years my doctors failed to believe or act on my pain effectively. I sought validation. I took scans, x-rays, MRIs, you name it to no avail other than the lumber spine and scoliosis. I was so over hearing that ‘pain is subjective’. If the pain causes you to pass out when you stand up from your desk or you need to stop your car on route to work, and lay in your back seat while strangers stop and call for an ambulance. All this despite having taken my daily meds. It’s hardly subjective. To this day, I am unable to sit or stand for too long.
Following an infrared scan, another thing introduced into the wonders that became pain clinics. The radiologist indicated in a shocked voice that I had ‘chronic regional pain syndrome’ the worst she had seen. No doctor had ever mentioned that to me before or after. That scan cost $199 and other than chronic levels of red markers all over my body the scan indicated possible future issues with my right breast, and it happened exactly as predicted. The nine biopsies they did may have had something to do with my ET. The scan also indicated a small blockage in a small vein at T6/7, a possible small clot. Has anyone heard of prolotherapy? I paid well for those ridiculous treatments. Another pain clinic initiative.
In 2008, I had a peripheral nerve simulator inserted at thoracic T6/7 level. I never changed the setting or turned the machine off. Nearly four years later, I lost a number of contacts on the system, they had become undone and the machine ceased to function effectively. I was unable to find someone in Brisbane who could repair it, so my Doctor encouraged me to have it removed. That peripheral stimulator cost about $42,000. Mostly paid for by my insurance company. I would pay for it again. I loved that machine as it reduced the benchmark of the pain. It was hundreds of times more effective than the tens machines. I halved my Oxycontin dose overnight without any withdrawal symptoms. I remained on the Lyrica. The clinical trials for Lyrica indicated that the dose for chronic neuropathic pain was 450mg daily. I experimented and listened to my body until I found a dose that worked for me, at the time it was 300g each morning. I am now on 150mg but in the early days I was on 1,200mg daily. I occasionally have spasm attacks in my thoracic region. I have had two dreadful night attacks this week. Very hot showers where I lay on the shower floor, increased daily meds and a hot water bottle filled with boiling water are my saviour.
I gave up work in December 2011, as a result of my condition, going off Oxycontin, taking 200mg long acting Tramadol, 150mg Lyrica, 100 Aspirin and 500 Hydrea has slowly improved things. I also have Rivotril that I take when the thoracic pain starts to spark up. The pneumonia that went undiagnosed for 9 months really messed me up. I still struggle to do anything active. I am now walking with my stick; it helps but I seldom leave the house except to visit my ageing parents.
I have regular blood tests and over the years my platelet count has sat around the 600 mark, when my platelets reached 1,000, I started oral chemo. My platelets are now at +500 mg on Hydrea. No specialist during my chronic pain journey mentioned the high platelet count. Yet the high count was demonstrated on every blood test. I am talking years. When I questioned my then GP on it, as I was having a low grade fever of 37.4, 24 hours daily she dismissed me. I continued to seek answers for my pain, never realising that I had been living with a chronic blood cancer. I knew from my own research that I had Thrombocytosis’ but I never researched Essential Thrombocytosis. It was a move interstate to Queensland and the remarkable doctor I met who explained that my high platelet count could lead to Acute myeloid leukaemia (AML). So I conceded to a bone marrow biopsy. The results indicated Essential Thrombocytosis Jak2 mutation. A chronic blood cancer that forms part of the Myeloproliferative Neoplasms (MPN).
It's too important and profitable for doctors, drug companies, researchers and others in the medical field to access grants and other funding regardless of any conflicts of interest. They must produce results. I am sure we all remember the thalidomide story! Thalidomide, lenalidomide and several newer versions of this drug are now used to treat some blood disorders such as amyloidosys.
I am passionate about medical research but somewhere along the way people must come before profits. I had never heard of the word "Oxycontin" when it was first prescribed. So, I researched the clinical trials. As it was a new drug intended for short term use there was no data on the long-term side effects of taking this drug. However, when I expressed my concerns about the Oxycontin my rheumatologist informed me in a stern manner that I would be on it for life so get used to it. When Oxycontin first became available, incentives were offered to doctors who believed that it was the best new treatment for chronic pain sufferers. What a horrific drug! And so it goes …
Living with chronic pain is difficult, it can affect one's personality with side effects such as rage. Those who suffer the most are families. How does one apologise for that?
I can relate so much to your pain. You have experienced some awful moments on your journey with ET. I also agree that pain does change one,s personality . I too take 150mg of pregabalin . I’m also ET JAK 2 positive. . I’m trying to change my diet and look at everything I eat that could be causing inflammation . Apparently what I understand JAK 2 is driven by inflammation. You are not alone please stay safe and positive it helps enormously.
Hi Kiki, the MPNs are indeed driven by inflammation, the doctor that finally diagnosed me told me unequivocally that it was the cause. A dreadful virus or bacteria somewhere along the way may have caused our conditions. I remember mine quite clearly. Thank you for responding, sometimes I think it helps if others know that there journey is similar to someone else. I trust all goes well with you.
That’s very interesting information about the bacteria and virus. That wouldn’t surprise me either . Yes I think it’s an help when you know you can speak to other people who are going through the same condition.
AStaunton, Hydrea causes loss of magnesium. Pain causes loss of magnesium. A magnesium deficiency leads to a vitamin B1 (thiamine) deficiency as it needs magnesium to change it to it's active form. Thiamine deficiency has been linked to fatigue, loss of appetite and impaired cognition, chronic neuropathic pain among other symptoms. Search on "krispin magnesium" and "mgwater" which are two magnesium informational web sites. Krispin lists other causes of magnesium deficiency in addition to the daily amounts and well absorbed forms. Also look into "nothing boring about boron" for It's benefits. Search on boron and borax for their chronic pain relief. Research thiamine to see what else it does as well as the other B vitamins, especially methylcobalamin, as they work better together. Benfotiamine is a fat soluable form that the body converts to thiamine which offers important benefits for chronic neuropathic pain and for the eyes too. Also, research how resveratrol and quercetin, working together, impact MPN's . Always consult your health professional before using any supplement.
I have magnesium and I have taken it from time to time but I have never taken it consistently. I am certainly going to purchase the vitamins and see how I go. I appreciate you knowledge of vitamins and plan to purchase them when I next go to the pharmacy.
I appreciate your advise so much and thank you for sharing it with me.
Your story is so well written, but truly heartbreaking. What a sad world we live! I’m so sorry that you have been exploited in this manner, it is unforgivable.
We hear the terms ‘drug profiteering’ and ‘cash cows.’ But to people like me they are meaningless words without stories like yours. Although I had some idea of how this impacts the vulnerable, I was guilty of not fully understanding. Your story has helped to educate me, so thank you for that.
It is what it is, in Australia. We don't have MPN teams. If we want to visit our GP we wait for days for the next available appointment. The Health system is getting worse, so much worse and we pay for Private Medical Insurance. Oh, the stories I could tell you. Some are so ridiculous that they are funny.
Your email touched me greatly and I thank you for that.
I find it difficult to understand how someone can be able to cope with so much pain. Also the Emotional and financial burden it has put on you. The time and effort to attend clinics whilst in pain. Since diagnosis and being on hydroxi has your pain reduced?
My pain started to improve after I stopped work because one of the major activators of the pain was sitting down. I sat down for hours a day, I had a stand up desk but lasted 5 minutes because a damage to my lumbar spine. I am also so much less active. There was a time I sewed everyday, everywhere. I would sew in Doctors waiting rooms, buses, trains and home and I gave it up a few years ago when I got sick. Things are much better today. I recently had a Doctor in the Emergency Department of a local hospital who said to his nurse 'throw her two panadols and get her out of here.
Writing factual events is easier than expressing emotional ones. I have seen dark days when I tried to end it. I recall a therapist telling me ' the children of parents who end their lives are more likely to do the same within a year. That was a hell of a wake up call. I can't remember the stats but since then it is simply one day at a time. I rarely remember yesterdays pain and work at controlling todays. I have a catholic husband and the catholic church does not support 'end of life' I am 59. Out of respect to him all is good. I am catholic too and I am a STRONG SUPPORTER of 'end of life'. I have had an amazing life I consider my self blessed (when I am not in pain). The worst thing is I can no longer do house work,
Hi Anna, I’m 59 too... I’m originally from Brazil and I’ve got a friend over there who also suffer from neuropathic pain from a stroke 5 years ago.
He hasn’t worked since ( he is a photographer) and also has thought about ending his life but he’s got two children and two grand children who are the reason why he’s still alive...
Thank you, when I wrote a small part of my story I didn't think for a minute that it sounded sad. So many of us suffer in silence. You keep much of your suffering to yourself and go on another day. I am Australian born of Spanish parents. I have seen a little of beautiful Portugal, visited the Holy site of Fatima, been to Petra, the Pyramids, the Valley of the Kings. Abu Symbol, Paris, and so many other countries. I have lead a stressful but fun life for the most part, balanced with greatness and difficulties. It is a shame travelling is becoming harder to do now that I am able to have the time to do it. I was medevac'd the last two cruises I did earlier this year. My favourite sites are Fraser Island, The Great Barrier Reef (heavenly) and a small village in Cyprus called Pathos. I like Morocco too, I think I may have some Moroccan blood being that my mum was born and lived at the very south of Spain. Good Night Hybiscus and God Bless.
It is truly dreadful to hear that you have been put through the healthcare system mill when dealing with such significant chronic pain. It sounds like you have had to learn to become your own best advocate, which is something all of us with MPNs must learn to do.
I am truly baffled that you could not have your peripheral nerve simulator repaired/replaced. No one in your entire health care system knows how?! That does not make any sense, It sounds like a profound failure in a healthcare system. I simply do not get why that would be considered acceptable. It is incompetence and ultimately malpractice on the part of your healthcare system.
While I also deal with some chronic pain issues, it is nowhere near the level that you are facing. There are a few things I have found helpful that perhaps might help.
1. Anti-inflammatory agents to deal with the overproduction of inflammatory cytokines driven by the JAK2 mutation. I use: Curcumin, SPM Active, and L-Glutathione.
2. Massage therapy by a skilled therapist. (Someone who practices the medical form of massage as treatment).
3. Consultation with a Integrative Medicine doc (aka Functional Medicine) to look at my needs in a holistic fashion. Looking at systemic inflammation, nutrition, exposure to toxins, etc. If you are considering complimentary health interventions - very important to factor in how these approaches will impact traditional Western medicine approaches. Complimentary health supplements can and do interact with other meds.
4. Consultation with a MPN-expert doc. Most hematologists do not have the KSAs to effectively treat MPNs. Here is a list of docs with that expertise mpnforum.com/list-hem./ . Something to consider would be a switch from hydroxyurea to PEGylated interferon or Ruxolitinib. You may find greater relief from secondary symptoms with these meds. This is something that it is critical to talk to a MPN Specialist about.
5. Qigong - when used for healing, technically called Nei Gong. Tai Chi is one form of this practice. There are many very gentle Qigong practices that you would be able to do. It is based on the same principles as acupuncture. If you are open to it, learning to control the flow of energy (Qi) in your body can have real benefits. It is important to find a skilled SIfu (teacher) - not just some karate guy who took a Tai Chi class.
Do please stay in touch and let us know how things go. It sounds like you have a lot to offer this forum based on your own experiences and knowledge. We are truly stronger together.
You are a sweet heart. I have done the massages, done this special Chinese tea that tasted like dirt and lord knows what else. I have just given up. I will review your recommendation and google them because I am not familiar with some of the things your have said and then I will take it to my Specialist.
The peripheral nerve simulator was a product purchased by some top Doctors in the State of Victoria. It was never picked up be many other pain specialists and that is where my issue occurred. I lived in Canberra so when I wanted to visit my back pain specialist about my nerve simulator I needed to fly interstate.
I look forward to reading some more of your experiences, Oh, you are right, I researched chronic pain daily for years.
I do hope you were/are able to travel to keep your peripheral nerve stimulator functional. It sounds like it is one of the most effective things you could use. I have used a TENS unit for back pain and found it to be helpful. I imagine the higher grade stimulation would be much more effective.
I also look forward to hearing more about your experiences. It sounds like you have learned a lot on this rather difficult journey you have been on. I think you have a lot to offer the forum.
I started a post and then lost it. I am very interested in everything that Socrates_8 (Steve) has to say, his knowledge is impressive and the positive enthusiastic manner of his writing style. He recently wrote a post and informed me that there is an MPM Specialist in Sydney now. It is still too far from The Sunshine Coast, in Queensland.
I have had a second bone marrow and nothing seems to have progressed in seven years since my last one. Except my eyes are so swollen I could be having a toxic reaction to the Hydrea. I have never taken more then 500mg daily but my platelets, red blood cells, white and haematocrit reads are generally on the high side of the normal range. Even my Haemoglobin has been in the 150s for years. It came down recently to the 130 range after an iron infusion.
AustraliaMelbourneVictoriaAssoc. Prof. Stephen Opat
AustraliaMelbourneVictoriaProf. H. Miles Prince
AustraliaMelbourneVictoriaDr. Annabel Tuckfield
Hope you do get all of your treatment needs addressed ASAP. I am really blessed to have some terrific providers close-by and am only 2-hours from Johns Hopkins Hospital, where some world-class expert providers are available . Having both PV and NF1, recent hx of a brain tumor, jaw tumor, atrial tachycardia and various other inflammation related issues has all made me realize how important quality healthcare really is. That and becoming very assertive in managing my own care.
A major part of your immune system, AStaunton, is in the gut comprising an area the size of a tennis court. The balance of good and bad bacteria will affect your health as bad bacteria release urease, among other toxins, which also interferes with absorption pathways .
I encourage you to search on " Bacterial Urease and its Role in Long-Lasting Human Diseases" for more understanding on urease. Fermented foods are important for good gut balance. I hope you study the subject of probiotics and gut health in depth as many products on the shelves won't help you.
Thanks Pte82, I will. I make my husband take Vaalia Yoghurt daily on the advice of a nurse who once told me that it was more effective at releasing MRSA and VRE from the blood stream than broadstream antibiotics. My then husband had Amyloidosis and within 7 days the MRSA was gone. I couldn't believe it. Anthony my current hubby had Non-Hodgkin's lymphoma, its has been indolent (great word) for five years. I will see what I can find and start reviewing our menu accordingly.
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