We have a very exciting announcement for you. We’re launching eLearning Programs to all members of HealthUnlocked.
What is an eLearning Program?
Short, online and self-paced educational programs created for you by our expert community partners and non-profit health organisations, to help you manage your health.
We’re just getting started, so we’re sorry that most of you won’t have a relevant program straightaway - as this is a brand new addition we’ve added to HealthUnlocked. We’re working hard to offer programs to cover every condition and wellbeing topic. We just offered this technology to all our non-profit community partners and many are starting to look into it.
In the meantime, have a look at some of the available programs we have to offer now:
I have severe scoliosis and don’t get much help or advice. I was always extremely energetic and mobile until I reached my late 60’s and now suffer breathlessness (apparently one lung is greatly reduced in size due to skeletal deformity) and lower back pain. I had tendon reconstruction of the hip muscles due to tears so am painfree there but am finding it really difficult to support myself even though I have kept my weight to 9 stone.
Nutrition please. (1) optimising diet and nutrition for specific conditions - IBS, chronic fatigue etc. (2) general nutrition courses, and if possible geared around going towards veganism and ensuring you still get all the nutrients you need. In general: eating for wellness!
Hi, sounds like a good idea and I guess most of us are going to reply with whatever our condition is, so for me something on Prostate Cancer would be useful.
But also programs that compliment that i.e.
Pain Management
Diet and Nutrition
Complimentary Health
CBD Oil
Coping with a serious/life threatening illness
Keeping fit
and I am sure there are many more.
Personally I think short soundbites or items of information are better, so a 2 minute video and not 10 minutes, better to do 5 x 2 minutes. Likewise with documentation.
I know you have a community for psoriasis but I would like to know more I have 4 different kinds pustular,erthrodermic,guttate and a little plaque it's a autoimmune disease. Would like to know why and what causes It. My immune. system is messed up bad 7 years ago the chemo finished it pretty well off.so I can catch anything going around. So I would like too learn about the immune system. Love susiejo1948
Supporting people with mental health issues would be one. I’d also like to understand more about conditions within the neurodiversity spectrum and again how to be a supporter/ally.
Information about Primary Immunodeficiency, and how best to live with it. I have CVID, my blood cannot make Immunoglobulin which leaves me open to serious infections from all bacteria, viruses, fungus, moulds etc. My GP knows nothing about my condition, and I only get to see my Immunology Consultant once a year, so I have no point of contact for help and advice. Any information would be wonderful.
Degenerative lumbar scoliosis and stenosis - how far does it go? COPD; essential tremors; osteo arthritis; type 2 diabetes; peripheral neuropathy; single sided deafness; unipolar depression; ataxia.
Hi accurate information about Endometriosis, treatment options, including pain management, complimentary therapies and follow-up advice. Any help to challenge GPs and consultants, as well as unbiased pros and cons of medication. Thank you
same here please plus gum disease is it to do with the periodontal or endometriosis ? what to avoid in nutrition if we have endometriosis ibs and pcos .
I have many health issues but still don’t understand how I can so many at one time. Understanding the medication and what damage they can do (I have Liver failure through medication). How consultants say one thing but report another???
Nutrition and Diet please. I've been newly diagnosed with a chronic disease Primary Biliary Cholangitis and Autoimmune Hepatitis. Any information regarding a healthy diet to protect my damaged liver would be most helpful!
CREST please, I’ve been amazed at how many of my weird and wonderful symptoms are shared with other members even though GPs seem to know nothing about them. Thankyou
Especially if this includes a selection of the most frequent types and causes; and how they often evolve into others. Vestibular migraines appear to be insufferably common (he said, whilst suffering one). After 20 years of the blasted things, I am still learning… – and always several steps behind.
Dilly_Dilly, You can learn an awful lot about thyroid conditions (especially hypothyrodism/underactive thyroid) if you join the HU Thyroid UK community. Just mentioning in case you're not aware of this community healthunlocked.com/thyroiduk
I would like to learn how to manage stress that comes out of the blue when you have been coping with "other things " quite well,but you mind then thinks otherwise!
Hi Laura - i am interested in any research and understanding of restless leg syndrome. This is so hard to control and live with and seems like very little research or help is available. Tis a condition that drives you insane, particularly sleep deprivation and inability to rest. I am also interested, like many others, in pain control especially in the elderly where pain such as arthritic pain is likely to escalate. Elearning programs seems like such a good idea.
I must admit it that I like beer, 2 years ago I was in hospital with acute heart failure, as I doesn't smoke my consultant said it was down to alcohol.
Going to the pub is an escape for me what else can I do?
Practical diet and lifestyle changes for those affected, particularly solos.
Remembering that the optimal diet is the Mediterranean choice and one suspects that 'Mediterranean' extends to lifestyle considerations too, for instance maintaining good social contact. Come to think of it, 'diet' is the wrong word and concept entirely and one should be referring to the particular lifestyle. So, go to it 'Health Unlocked'
I need an organized method for a proper diagnose. Once frustration sets in & your story gets too long, well, a diagnosis is but a dream. Can you help with that? Could we poll from physicians what it is that we need to say to be heard?
Really. I don't want to waist their time as much as my time. And I don't think everyone needs to travel to the Mayo Clinics for care!
I have 2 Auto immune diseases pulmonary binary silicocis and Sjogrens symdrome as well as type 2 diabetes. Anxiety, Depression, Hypertension, Low in Vit D3 and On Folic Acid long term. Would love to learn about any or all.
My body and health have really been compromised by the medications I was on with my autoimmune disease. I now have CKD 3b, atherosclerosis, high blood pressure, high cholesterol, severe arthritis, & I’ve lost a lot of muscle mass, especially in my legs. Of course, not all of this (arthritis & kidney disease) are from the medication, but are a result of the autoimmune disease. What I would like to know is if there is anything - and what - I can do to maintain and reverse some of these conditions? My body is at least 10-15 years older than it should be,
The importance of vitamins and minerals to the wellbeing of a person. GPs nowadays treat symptoms, they should look for deficiencies and offer people tests to keep us on the straight and narrow so we don’t develop serious illnesses and disabilities as a result of these deficiencies.
Multiple Sclerosis if you don't have a forum already. Aspergers? Best advice would be coping with growing old: how to prepare for it; what to expect; how to prepare. Another topic would be family dysfunction? Stress is the over-riding condition we contend with too but that has a lot of coverage outside this forum. Still . . .
It could be useful for all conditions to have suggestions on how to manage your appointment with your specialist. They have limited time with each patient so understanding how to maximise the time would be great. Perhaps some 'top tips' from doctors, nurses and specialists.
I also agree with other posts that learning about nutrition, exercise and managing financial concerns could be useful.
I think it would be good to do something to help people learn how to deal with the NHS and doctors. I’ve been using an HU forum for many years now, and really often people have problems knowing how to communicate with their doctors, how to politely stand their ground in the face of busy, busy specialists, and so on. People don’t know what their rights are - like getting blood tests results and medical notes. They don’t have a clue how to look at their results and what questions to ask, and they son’t know how to present their symptoms. Getting good healthcare is a partnership, not a contest.
Or HOW TO LIVE WITH CELIAC DISEASE. Celiac is one of the hardest conditions to find help with!
It's almost impossible to find accurate information on any aspect of CD - including what it is which is ridiculous.
Registered dietitians in my experience know some basics but don't fully understand either. I had one who just read pamphlets to me. Another who walked around the hospital cafeteria w me insisting that anything with no flour was safe for me to eat! I could go on but I'll stop.
My doctors, a Hematologist, Gastroenterologist, Gp, Neurologist, Sleep Center doc. & 3 nurse practitioners all admittedly "know nothing" about Celiac disease.
I'm fortunate enough to live an hour away from a Celiac Clinic (there are only 5 in the US) however insurance won't pay for me to go because it's not medically necessary in their eyes.
Currently my liver enzymes are 4xs the normal level & my doctors have done ultrasounds etc trying to figure out why.
I googled "celiac and elevated liver enzymes" & boom! Completely normal (abnormal) response to accidentally consuming gluten.
I follow a strict gluten free diet the best way I know how but 2yrs later I'm still figuring stuff out on my own.
Other things I had to learn the hard way: I can't use the same microwave as my kids- they eat gluten. I can't use their toaster. All gluten free food actually contains some gluten which builds up in my system bc I cannot process it.
So much more.
Thank you for taking the time to read this if you did lol.
💖
And thank you for being so awesome! Idk what I'd do without HealthUnlocked.
I am same, not enough done to educate us on how to change to a gluten free way of life. I'm still struggling and can go full days without eating if not feeling . There is nothing quick, easy and tasty for my husband to do for me . I was a fussy eater before diagnosis and i hate food now. Going out is a nightmare I am not the type of person that will eat to simply feed their body, if i dont like then i do without.
About 10 years ago i had an eating disorder and as time goes buy i can see me falling into old habits. I know i need to eat cause i have so much other things wrong with me but not now, i just can't eat what i find disgusting xx
How about Functional Med- how proper diet, proper movement and stretches, meditation , etc, can transform one’s health. All of these certainly certainly helped me.
Many of the requests on here such as anxiety and stress management, while absolutely valid, have literally hundreds of thousands of help and support guides all over the internet already. It’s awash with them — reinventing the wheel seems rather a waste of your focus when there are new vistas to explore...
ADHD in adult women is woefully lacking in research and guidance - even in dedicated ADHD forums - most research focuses on children or if you’re lucky, adults generically. Women’s ADHD symptoms are markedly different to these client groups and women are crying out for a quality programme such as this.
Living with sickle cell anemia please. New medical breakthroughs about the disease, and just relevant information for adults living with the condition and how others can help. Thank you!
that is great to hear! (I should have checked your profile and would then have known you were a member there. I hope all continues to be a slow-go CLL for you with not problems.
I would like clear information on Osteoporosis. I was diagnosed with ore osteoporosis but no advice given and I was left to find things out myself. Information on what to do, what supplements to take and where to find the best ones and an exercise regime to help too.
I have managed to improve my prognosis but with no help from the NHS. I had to spend hrs looking it up and asking others. No advice on diet or supplements was given at all.
My hubby has ipf, and we live in France. His medical treatment is second to none, but unlike the UK we have no clinics for help and advice, other than the hospital. Would certainly like help with managing this condition, as a helper and for hubby.
All the previous suggestions are excellent,I’m interested in nutrition,it’s effect on the body and it’s wellbeing with a particular interest in maintaining eyesight
MD mac degeneration is a good one, googling take the typical nutricals; lutin, etc.
A recent connection to mac degeneration is mycotoxins, mold sensitivity. No single books or resources, but the prevention follows cleaning ones diet and environment up. Its shocking to find how much mycotoxin is in our food chain.
Dave Asbrey, bulletproof.com had huge mold poisoning problem so talks alot about avoiding mycotoxins. Search amazon.com also.
Especially things that are dried after harvesting; peanuts (nuts), coffee, tea. Very very moldy unless you google and buy products that are tested and processed to avoid mold... One aspect of eating and living cleaner and healthier. How much is written about Ben Franklin loosing his eyesight,, nothing right? Because he and the generations prior didn't have this problem nor heart attacks or cancer... Eat how our great great grand parents ate.
Start reading the Paleo book authors, Intermitant fasting as well. Google intermitant fasting now has a huge google foot print. Buy food closest to the farmer, at local farmers market. Lower or eliminate gluten/corn.
The cancer book authors actually are good resources since they ultimately solve run away inflamation; Dr Nasha Winters, etc. The wholeistic Dr's books are decent.
Only mentioning as 1 in 1000's of helps: bulletproofexecutive.com click start here. Asbrey's books are good, reading / read all. Also authors on Paleo and now Intermitant Fasting are finding some great science AND efficacy. Whats old is now new. LOL
Hi Lou, I just listed to yet another great talk by dr Nash Winters (googlable and a great book on amazon. Forget that its about cancer, its about "health"). She said hashi is 99% a gluten/celiac problem. Stop iodine, stop all grains/corn anbd read lables gluten is lurking everywhere. ALSO stop seed oils (they are inflamatory) like canola, sunflower, saflour etc etc only 100% olive oil. So much olive oil is cut with canola BTW. Buy direct from olive growers to be sure. In general clean clean clean up your diet. Autoimune/inflamation will start to drop after a month, minimum.
No answer will fit into a single reply. This is a list of learnable terms via google. Eat followingn Paleo principals Dave Asbrey's experoience and website is useful; bulletproofexecutive.com click start here. Eat food that is whole as close to the farmer as possible, go to local farmers markets. Forget about the disinformation about fat!!! Dig out your great great grandmothers cook books (in effect). As a help it is possible to drug free management of colesteral and in parallel inflamation is all posible through changing what you (we) eat, think, and connect with our fellow friends (connections). IE a wholistic approach to health. Colesterol is but one issue that has been co-opted into a profit center twisting both its benefit into a problem leading to a series of follow on problems if you follow all of the wrong advice; diabeties, chronic systemic disease (FM, RA, cancer etc).
HealthUnlocked is all about breaking the dis-information cycle. What is found to benefit the many (us) is more likely to be more efficacious then what benefits the few (corporate interests).
Please could you help so many of us struggling with the infantry stages of understanding of 'FND' and Nead. The labels are like ketchup, for many of us we need to be able to check the ingredients. With FND what I struggle alot with is the understandable loss of support available. I feel trapped, as hospitals, doctors and gps struggle, not only to understand, but theirs such little understanding. I haven't posted on here for a long time. But I've been deteriorating with my health, historically every 3 months. And whilst my wait for London feels like I may not even make it, physically & emotionally the doors are closing in, the general consensus seems to be, that as their not specialised, that it's easy for them to dismiss looking into what is happening. My symptoms I understand why there is not yet a framework or guideline available, as until enougth research is done, it's obvious that their is little that specialists can be confident to advise others on. Yet I've questioned a reasonable answer to my gp, if it were possible she could phone London as if she has no idea and neither fo our local neurologist, just maybe london have come across this. I know & seen how much pressure & financial constraints are available to the nhs yet I sometimes feel if this was a different disorder , one wouldn't be sent away to deal with problems like stopping breathing, or other issues, that really arnt things left to chance or hope. Go private some say, but I can't imagine there is anywhere yet. My trust is on hope that even if I can't be the one to of beniffed, that what is learnt from my deteriation could help others, but one sad thing I feel is, in 10 years, others will gasp to know just how hard living with a condition like this is. I struggle to formulate my words or thoughts yet I'm glad I saw this, I hope that my two pennies worth may help not just I, but others, itll help those in the field understand or identify patterns which could help in understanding. Itll not only help me but the friends and family who anxiously hope that we, meaning all others I read on here struggling to understand, to give them hope bot concern, it's hard awaking to symptoms no one knows about, ...the other thing is others like professional turn to me for an understanding yet I've no guidebook I've no answers but I do try to explain, the unexplainable. Who knows but if the professors could follow these threads there expand on the brick walls we all face, there could be breakthroughs, sadly my experience is of understanding, that until I am seen, they obv can't comment on my health as they need to see me first. Sadly how will I travel to london for 3-4 hrs, I could last year, sizuring all the way, but now another year on, I'm trying to come to terms with no one knows why I stop breathing as short as 10 mins of a journey. To begin to come out of a seizure to here one first aide paramedic say to a paramedic who only came on board when the crew realised they had not been told about my health, I hear the words, thanks for travelling on board, she would not of made it, would she, and the paramedic who was never properly ordered for replied, no, ....that level of fear would escalate the anxiety of anybody. I end by saying to live not knowing how long for, to be trapped by professionals not being able to be involved, as I'm classed to complex even just to be given emotional support, despite the hopefull request I could have some trauma therapy first .....when calls declined....wouldn't that not concern anybody. So I sit alone, where this time last year, i was being told that there was no funding available and I'd have to leave the complex nursing home, and to return to a home that hasn't my daughter here, nor anymore my car, or work outfit or the daily, one could say mothers meeting, or school run, out of term catch ups, and isolated as my wheelchair nor health would no longer enable me to visit the friendship, which have been lost, as they lost me to a traumatic event which happened in 2017, and I'm still waiting to be able to open up about feelings I'd never had before, this is why, an opportunity to not expect but maybe read responsive from would be invaluable...we can't be Google doctors ...yet what does a neurologist in a hospital do when they diagnose you, regardless to if you have access to the internet do?..... they hand you a piece of paper with a website, and send u away, so until our only hope if understanding is based upon google searching, then I think this would be such a positive Avenue to take I hope a page could come available....who knows it may double the understanding of the current research....I'd rarther be a Guinea pig then imagine any one else going through what I have.than k you for considering setting up this option. Hope's & wishes for all on here to have a stable and supportive network around you. Thank you. L x
None of the listed programmes are of any use to me. Tinnitus is not a hearing loss but a hearing obstruction and an annoying one at that. My most recent audiograms show that I have mild hearing loss which will get steadily worse the older I become. I have no other serious health issues apart from high blood pressure which is being treated by medication.
Progressive Supranuclear Palsy and Lupus many thanks. I was diagnosed with PSP just a year ago and with Lupus 6mths.ago. so any help with both would be appreciated.
Hi I would like to learn how to handle and self help myself regarding Atrial Fibrillation, it is a complicated condition and can relate to heart,digestion , vagal nerve and other bodily sensations such as stress and anxiety.
How to find great Dr where patients rate as highly effective, measured by outcome (absolute measure) and outcome vs cost. In a cost run away system that additoinally has lost all connection to effacy, knowledge gained at HU and Dr Google still falls short if putting it into practice needs getting someone with a Medical License to sign off on the needed steps.
It really depends on who you see with pain management, 2 I saw were as much use as a chocolate fire guard!! The last couple have been better. Take care Lynne
It would be wonderful to provide access to learning programs for those patients that are involved and want to: become advocates....participate as an advisory panel member.....work with research to provide the patient perspective.....learn more about the inner working of clinical trials.....how to best find relevant (to them) clinical trials......etc.
I have done all of this, but had to figure it all out on my own. There needs to be a better way!
I would like to do the E-Learning about Dementia my father was diagnosed with PV about 3 years ago he is on hu I have ET jak2+ since 1994 I am also on hu I since diagnosis my father has been in poor health he is in the hospital yet again been going on since May he had a seizure was put on Antibiotics but because of them has contracted c diff and Dementia would like to know could it be due to pv he is 79 and also if I can learn as much bout dementia as my and I are going to care for ourselves instead of getting a carer I know will take its toll on my health have already lost stone and a half much to consultant's concern
Yes diet and nutrition would be good. Also how to pay for drugs not covered by insurance. How do you get the help you need to do basic things like get your house cleaned when you can't afford to pay someone. Services available through medicare.
Great beginning for the learning programs. I am particularly pleased to see one on Clinical Trials. I am Research Ambassador for NIHR and firmly believe that part of our care of our long-term conditions lies in Clinical Trials and our involvement in them. If we want cures or better quality of life, we are well placed to play our part in making that happen.
Non-alcoholic Fatty Liver Disease is important to many as it can impact on medicine use and, ultimately, lead to fibrosis. As there is no real drug treatment, management of the condition would make a good subject for a learning program.
I'd like to learn how to mentality cope with pain! I'm struggling big time. I'd like to know why men get treated quicker than women? Why does anyone have to wait months for relief of chronic pain. I take 6 tramadol a day and I'm still struggling. I can't cope 😪
Role of vitamins and minerals in achieving optimal health.
Osteopenia treatments that do not cause development of poor bone quality, perhaps found in a supplement.
Sjogren's Syndrome - Secondary due to cancer: tests to diagnosis, treatments with least harmful drugs
Blood pressure AND pulse numbers considered safe for woman over 50
Blood cancers: Myeloproliferative Neoplasms
Discussion with helpful ideas on how to deal with local doctors who are dismissive of problems brought to their attention about our conditions, even after being diagnosed by Specialists in the disorder(s).
Underactive thyroid, pre-diabetes, menopause and depression - ways to help myself and best nutrition for me with these conditions and help to lose weight.
I am 6 months post-kidney transplant. I'm fortunate that I haven't gained weight since my transplant as many do. However, I am starting to lose weight with lifestyle changes and implementing exercise. I feel like there is very little information about Nutrition and Exercise out there for post-transplant patients.
My needs have changed, but most information is either a slightly modified version of the dialysis diet, or the standard AHA diet plan. I have found that neither of these are sufficient and could be improved.
I am determined to give my new gift a body that it can thrive in, and I'm sure others out there would be interested in learning more information that can help us all.
Dealing with the menopause & related mental health issues that can accompany it.
It is a living nightmare for many women and there needs to be more support & info for women going through this chemical / hormonal upheaval - not everyone wants to take HRT - other more natural strategies should be more readily available.
Pernicious Anaemia .. I'd like to know if sublingual B12 melting tablets help inbetween injections.
Also, how often should a doctor give shots .. this seems to vary greatly in every country. I'm in Australia
• in reply to
B12 in UK - Partner gets a shot every 3 months but it's not cutting it for her PA. I'm on 100mg tablet daily re Cirrhosis.🤔
Channelopathy as my current consultant isn’t as hot on it as say the Royal Brompton hospital. If I don’t speak directly to them, I’d like to know more about my condition & amiodarone.
Hidradenitis Suppurativa, everyone should learn about. It’s such a messy disease,. MRSA and infectious diseases.
This seems a brilliant idea. I would like to learn more about living a heart condition and getting the right advice on improving/maintaining heart health.
That is a very good idea. I have been trying to help my husband and I have been successful but it has been so hard. When we got out of the hospital, we did not have any guides but to trust a safety vest. Moreover, the panic of losing him. I woke up at night and got so happy when I heard him breathing. All I can tell you, low sodium, water. He checks his blood pressure three times a day, he also has a heart rate monitor. The hospital did not offer any rehabilitation programs or anything. Not even a visit to a Nutritionist. Everything would have been covered but when you do not know......
Next week, we are going to start an exercise program. Now, since he is better the insurance does not cover. But, it is ok. He is alive and here we are fighting a day at a time. Good luck!
The main problem I have found when managing health conditions is the conflicting advice. "You can't do right for doing wrong" when trying to do the best to help yourself with diet, nutrition and exercise...
Pain management I think has to be top of the list as it's a symptom of so many different conditions. I also liked the suggestion about help with managing medications, especially if you wake up sleepy and forget if you've taken a particular tablet, as we do so much on autopilot/routine.
There are a lot of illnesses caused by inflammation, and auto immune/ allergic conditions, so it would be nice to get some sensible attainable suggestions which would help.
Its a great idea, it sounds like a lot of work to set up but it will be really helpful.
Hi Laurahu it's great to see a positive change at hu! Can I suggest that the program about dementia could also include help for those who care for dementia suffers as my father has dementia and all I know about it is the bits and pieces I've picked up along the way! Your help in this matter would be most helpful!
Your site has helped me look after my husband this last 13 months in ncluding chemo problems/ surgery/ complications/diet/ weight loss and there are SO SO many different problems as every single patient is different
And Pancreatitis please ? Have read everything on the net but advice on diet/ pain management/generally coping ?
Great resource. I’d love to learn more about liver conditions, cirrhosis in particular, nutrition and the impact of how your chosen line of work impacts your whole array of health markers.
So much of our bodies rely on that small little butterfly shaped organ and once this organ fails it causes endless symptoms which are so hard to sort out because it causes other illnesses/conditions.
I am under active and medicated. Been like that for 3 years now. I am still trying to learn and would love a better knowledge of this horrible disease.
More info on CKD diet. Also ways to slow down progresion things to do and what to be aware of.
Barrett's esophagus and hiatal hernia. Two things I was not familiar with. Thank you. Anyways, this site has been wonderful for me. Thanks for your efforts.
I doubt they will even want to acknowledge the possibility of healing ourselves naturally and with diet. How would they make money from selling us those magical pills then?
I'm interested in women with recurrent low grade bladder cancer. Would like to hear about any new development in treatment. I am presently on chemo infusions of gemcitabine followed by docetaxel once per month. I have had 7 turbts with recurrences of the same superficial cancer coming back, but not progressing into anything invasive. BCD did not work for me.
Lymphoedema and chronic pain please! I keep try to master how to live with few condition but pain is always something which I cannot find a way to manage!
Wonderful...ty! Maybe a class on the role of spirituality in coping with a chronic disease process. Finding peace and purpose in the midst of chronic illness.
More information concerning Periferal Nueropathy and the connection with Rhumatiod Arthritis. GP and RA Docs seem to ignore this life changing condition.
Hashimoto underactive thyroid please. This has such an impact on every cell in the body and therefore on your daily life. The impact on digestion, and therefore absorption causes us to develop deficiencies, intolerances etc.
And adrenal fatigue, how to recover so you can lose weight. If the adrenals are impacted, and they usually are, it is impossible to lose weight.
What I would really like is information on medications available to treat Atrial Fibrillation, differences between rate and rhythm control, and the differences between anticoagulants
Great idea Laura! I would like to learn more about diet and supplements to know how to spot a fad from a fact. To also share learning on emotional wellbeing (stress) how to recognise, face up to and tips for managing,
Mines more of a general comment. Firstly I like the list HU have already suggested but for me the main reason I’m on here is because of the interaction we have with fellow sufferers and therefore knowing we are not alone. I wouldn’t want that opportunity to be taken away from us. Many of the comments are basically what we have now, asking specific questions so that’s not an issue but a bit of how to go about things could be useful. I’m specifically thinking of what to ask in reviews, the key issues and how to approach the experts that may or may not actually be experts! In some ways we have become too knowledgeable but that can also be detrimental, thinking mostly of those recently diagnosed who want to jump in at the deep end because they have heard about it without trying the basics and working up on their particular route which may not be best for them so some sort of reaching a crossroads guide
I'm interested in pain relief and have already posted about problems with headaches and foggy head after codeine sulphate but I'm interested in CBD oil now and a reliable, trusted source of information please.
Would like learn more about Giant Cell artertis , polymyalgia rheumatica other vasculitis disorders as well as autoimmune problems how they can be managed. Pain is a big issue.
I’d like to learn more about CMPA and Severe chronic constipation I’m still learning how to manage these conditions as my 4yr old has recently been diagnosed cmpa and has always suffered with severe constipation x
Having recently been advised of a heart failure due to issues witht e ledt ventricular, i find the issue si am having to understand is dietry considerations in terms of managing things i had never even condisered before. Managing salt and fat is one thing, but when you have to manage your potassium levels as well (keep them low or raise the levels) - with very little infomation out in the web, and what info there is contradicting what needs to be done to manage fat and salt levels - it all gets a bit confusing. Some one else threw in another term the other day and i couldn't be bothered to reach for my Latin Dictionary to understand what it was or meant - just another phrase that is making my head spin in all of this world of managing your heart, and kidney, and sleep, and exercise and...
Did I mentione exercise? Try to undertake exercise to manage my heart but that does not impact on my arthritic knees is another maze I am trying to make sense of...
I had a cardiac arrest at home, thank god I made it. I had a defibrillator implanted and since then a cardioverter. Would love to be able to talk to people on similar journey
In all honesty I am sceptical. Which you can understand, there are millions of people here being lied to, kept in the dark and ignored.
There are many things that NHS denies and many doctors fail to acknowledge for they make a hefty amount from those unfortunate enough to experience many physical to invisible illnesses; from reccommending them drugs which even further destroy their livelihood of getting better to commissioned drugs which have no positive role in helping the person overcome the illness but instead cause many undesirable side effects, often causing a further development of problems down the line.
What many could use is the truth about viruses, toxins, chemicals, autoimmune disorders and associated conditions. How to treat the root cause and not just cover up the symptoms.
Topics like EBV " Epstein Barr Virus", Adrenal fatigue, Hormonal imbalance, Endometriosis, Polycystic Ovary Syndrome, Insulin Resistance, Depression, Liver, Brain and Gut related issues. These are all linked believe it or not. So how about educating people what they can do to heal themselves and support their immune system instead of suppressing it.
More awareness is needed of the anti inflammatory diet, suppliments, to acknowledge these issues that cause chronic pain and become a huge burden to live with, often resulting in loss of life.
Golly Gosh Hidden i bet you never expected such a HUGE response ..... 257 replies so far! EXCELLENT isnt it. I'm generally interested in all things lung related so that is a vast subject. Count me in on joining in though. Good idea.
Wishing you and all at HU a very Merry Christmas 🐿💕
I agree with those who suggested one on chronic pain.
I really benefited from the INPUT residential cognitive behavioural pain management programme at Guys & Thomas' Hospital in London. It was over 20 years ago and I still use what I learned there every day. I wish everybody with chronic pain could have it.
Re. pain experts who might advise or contribute: I would recommend
Charles Pither who developed the INPUT programme, Helen Clare Daniel who wonderfully helped me when she worked at the INPUT programme.
If you don’t think you can comprehensively cover “Living well with chronic pain”, (as people don’t want just to survive), you could make a start with “Myths about chronic pain”, which could help dispel unhelpful notions which make it worse, and with advice and info that can be put into practice to make a real improvement in people's lives.
I wish everybody could have what I had but failing that, it could make a big difference to a lot of people to have a resource here that they can use.
Whatever you had wish I could have, been in and out of pain clinics had injections to no avail and have ended up on all sorts of different tabs, incl MST, and OraMorph to top up. Nothing else just keep taking the pills, started 20 years ago and no signs of getting better, in fact worse if anything.
Practical help with maintaining a healthy posture. I've had a knee replacement and the weakness in my knee muscles have resulted in me beginning to look like the Hunched Back of Notre Dame!
Also practical help with Epilepsy. I've had it since 1962, but luckily my fits are reasonably well controlled now. I must say that I do have some arguments with doctors I encounter, including GPs. This is often about how MY condition presents. Also some pharmacists seem a bit ignorant about medication used to treat the condition. An example involves the use of generic medication and the Brand versions. One I took for quite a time had to be given as the Brand version for it to be successful, but some pharmacists refused to supply it even though it was written as the brand version.
Social issues are probably relevant to many health problems, I feel that this would be a useful one to cover.
Hello Lindy14, I too look the same but my condition is different chronic back pain, and I look like a very very old witch who is bent double only my bum sticks out as the pain is in my spine. Would also love to get my posture back again, but not holding out any hopes.
Jolly good question though and am pleased you have asked this. xxxx
Gut and mental health and JIA (Juvenile Idiopathic Arthritis), my granddaughter who's 3 has JIA Uveitis which affects her eyes please. Also being able to control Gut and mental health, also the joint aspect of JIA with diet, exercise and any natural supplements.
Sjogrens Syndrome as its so huge in range along with sero Negative RA and FM. I have all 3 and it's hard to tell what condition it is that's causing the pain,! Many thanks xx
Chronic back pain, have been to Hospital chronic pain clinic, but need extra help and any ideas that might help, take everyday 30 tabs and have to top up with OraMorph to combat pain. Have an inoperable back condition. I am 57 years old and have no life with this pain, it really isn't any fun although I do try and say it doesn't hurt when it's hurting like hell. Stress brings it on more and I have nothing but stress at this present time in life.
So would love to see/hear more regarding chronic pain.
A friend with Parkinson’s tells me many Parkinson’s consultants are very out of date in knowledge and treatments. Up-to-date knowledge and advice for sufferers and their carers could make a big difference.
I d like to know how diet affects our physical and mental health and how illness can be reversed through diet. I also want to know the benefits of meditation and exercise on mental health. Finally, I want to know more about psychology and how distorted beliefs like " what other people think of you is important" affect mental health and ways to break distorted beliefs and connect with true beliefs.
Mezz1 would like to see more information on airway obstruction, it's a nightmare having to go out, as I get choked to death with peoples cigarette smoke, smoke from fires, peoples potent perfumes,and shower gels ,ect going shopping,standing in queues with all these toxic chemicals is killing my airways and lungs. Been told it's more to do with my asthma than copd , I can't lift things that are too heavy as it leaves me struggling to breathe.
How to get the best out of medical appointments - preparation and what sort of questions to ask. With current waiting lists we look forward to our appointments for months, sometimes with very high expectations. The medical staff only have a limited amount of time, naturally, and have many patients to see each day. So what can patients do to get the best out of it, bearing in mind that the information given might be scary/life-limiting/include lots of long words etc.
Many of us might like to read tips on how to better communicate with our many GP's, Doctors, and Specialist. As I have experienced, conditions and symptoms to communicate to Doctors can become a full time job for the patients. This adds tremendous stress to people who are trying to get the most out of there appointments, that take months to get. Not all health care professionals communicate or share with each other. That makes for brain-fog, and patients walking away very discouraged and frustrated often. Doctor assistants do not relay information to other clinicians either, and we all see them or speak to them if the Specialists are not available. It would be greatly appreciated if there was some true properties to help us all navigate these systems better . Please. help us through these challenges. Thank you. Blessings, peace, thestorm
I am a survivor of a TBI for 39 years and believe that education is knowledge, understanding and awareness for all.. Those who live with an invisible disability or disorder are not "visible" to others and suffer behind a "normal" exterior.. Only those who have suffered such a challenge know how and what it feels. like. I feel that our knowledge and experience are ahead of the Textbooks, Lectures, Research and Treatment available throughout the UK.
I would like to see the subject of loneliness and social isolation in the elderly. I have a lot of friends who live a life of a hermit and have no desire to mingle or engage with others. Most of it is caused by depression and feeling old and unwanted. Thanks for the great ideas!
I've had epilepsy for over 46 years now and there's many people who need constant advice, support and more information on how to live their lives with epilepsy... This is a detailed subject but would be appreciated.
I advocate and educate many in groups on Facebook and also run my own motivational page for those people with epilepsy. I am also an Ambassador on Carenity UK which has a great range of health conditions.
How to handle the medical profession assertively, a step by step guide, when appointments are coming up. This would be good as patients would learn how to ask the essential questions. Learn how to question and not simply sit there and nod their head at the doctor. Tips on how to come across as confident and not easily fobbed off so the medics know that your polite but mean business.
I suffer from Pulmonary Fibrosis and Bronchiectasis. Some while ago I believe that you had a CD relating to Pulmonary Rehab. It is easy to get out of the Rehab habit and perhaps a permanent on-line location where one could look up procedures would be well appreciated.
Supporting this person’s suggestion fully. Nowhere near enough discussion on this subject. And, can I add, not just for the young - it very much affects older people too (by which I’m talking from early middle aged upwards).
To the person who suggests support groups - fine - what support groups? Where? Who will start such groups and run them? City based groups are no good for rural areas like mine. It does need a lot more discussion, I feel.
I would appreciate more information on the following please.
I am an 80 year old male.
After taking Prednisolone since 2007 l now have very brittle bones,Osteoporosis, revealed from a recent DEXA scan. I was booked for an infusion on the 3. August. 2019, first available date, 31. March. 2020. This l believe halts the bone deterioration for approximately twelve months? This type of treatment is it invasive? What can I do to help my bones, if possible become stronger, diet, non invasive medication, gentle exercise as l have had sixteen operations, (seven major joints) l am not able to do very much. I have successfully weaned myself off of Prednisolone over the last ten months. The ‘fog’ is gradually lifting and the weight gain reducing.
Diet to reduce my CRP?
Reduce Tinnitus?
Autoimmune problems?
Rheumatoid Arthritis?
Osteoarthritis?
Multivitamins?
Enlarged prostate?
Sensitive stomach?
Thank you so very much.
A very happy Christmas with a happy and healthy 2020 to all those great people at healthunlocked. com.
Hi, I would like to know more about vitamin D deficiency, vit b12 and folate deficiency.I've been suffering from vit D about 2 years until the GP discovered low vitamin D. Unfortunately, because I've been supplementing b12, my blood tests looks I'm in normal range but I have still symptoms of deficiency . My surgery said don't test homocysteine and MMA because I'm in normal range. I want to know more about this things because I'm out of work and still unwell . Thanks !
Thank you Laura HU anything to help me learn all I can about living with someone Dementia and outbreaks off c diff my dad has PV and been in and out off hospital since May with Seizures and outbreaks off c diff caused by Antibiotics given to him by the hospital he was admitted to they thought it was a brain infection and pumped full of wrong antibiotics causing numerous outbreaks of c diff I suffer ET jak2+ and in trouble for weight loss he is back in hospital he had been out for 2 weeks which was longest ever he had been out of hospital do not know if he will be home for Christmas
thank you and Merry Christmas best wishes Scottish Terrier
I would like to learn more about interpreting blood tests / analysis. I have CLL/SLL and have massive amounts of blood work done. FISH and other chromosome tests can be overwhelming in trying to sort it out is mind boggling.
Am I correct on thinking that the eLearning programs you produce are aimed at suffers specifically and not necessarily carers with responsibility for sufferers?
Do you plan to extend your eLearning to include those who help support of care for sufferers?
hi Laura, I have many health issues related to underactive thyroid also stenosis, ankylising spondylitis, intestitial cystitis IBS, a small hernia ,lumps on my neck (not large enough for FNA) No treatment offered. Not proven but mentioned Acromegaly,I no nothing about this condition, but odema has been mentioned in the past and have a large frame with glandular swellings, dismissed by GP.
Now I am interested in alternative therapies such as mindfulness, cognitive therapy, accupuncture,
EFT Need to find availability if avalable on NHS. Thanks mad margaret
REOCCURANCE of prostate cancer which was taken out in a operation in 2001 , I completed 39 radiation therapy treatments at 21str century oncology regional center. I think its in remission since june 19 2018.. I still see ad urologist on and off for psa testing..
I would like to hear more about CKD diet, (pre dialysis). Also for future information on home dialysis (heard that on Medicare they are proposing that will only pay for home dialysis).
Auto Immune Condition please. What are the new pioneering successful Gnome immunotherapies?
I would also like to learn how to read and understand blood tests results. Doctors always spend a while looking at the computer screen in consultation and discuss blood test results but never explain what they mean, due to lack of time I suppose. Just basic understanding of all the standard blood tests done for auto immune condition would be very helpful please.
I would like to know more about my conditions- I have fibrosis of the lungs, which is a result of the low dose use of nitrofurantoin an antibiotic used to prevent urinary tract infections. I have also been left with bronchiectasis, which is difficult to manage. I would especially like to learn about:-
*what scientific advances are being made in this field, especially if the new drug being used for cystic fibrosis can be used for fibrosis of the lungs and bronchiectasis.
*How best to manage the bronchiectasis- information is out there but it is patchy. It would be great to have a go to place for good reliable information and tips, including videos of how best to drain my lungs.
*Clinical trials and how they work.
*What is the best treatment available out there? How to ask relevant questions of health professionals in order to access it.
I have only skimmed through the info on Clinical trials. The answer I want may be in it so If it is I apologise now.
What is the lowest number of people that makes a clinical trial viable? I appreciate this will depend on the type of test so maybe a range. I cant think of the correct term but sometimes results are presented in terms of large groups of volunteers rather than true clinical trials. As we have so many members of the Forum could we not do some surveys of our members and report on the results.Surely someone would take notice if our sample was large enough to warrant our doing statistical analysis on it?
I need to learn more about spondylarthrosis in the lower back. Daily pain when standing or walking even sitting. How to keep muscles strong when the painfree position is lying down. I think the problem is outworn small facett joints between vertebrae. Anticoagulated for PAF, problem with painkillers. Concerns many older people. I cannot continue with yoga or walking
I'd really appreciate learning all I can about cognitive behavioral therapy. Are there different types of cognitive help groups?
I " think" I was in a cognitive behavioral therapy group about 25 yrs ago. But I'm not 100% sure . In thus group we did simple steps such as reading & saying words & looking words up discuss them and writing them down. Then putting them in a sentence. All openly discussing what each person thought the word to mean and how'd everyone use it.
I also remember talking about different types of parenting styles. etc.
Iether way I want to know the ABC's of cognitive behavioral therapy, & what's to gain/ walk away with learning. & What skills does c.b.t. teach as a constant use daily bettering lives.?
PROSTATE CANCER METAISE TO PELVIS AREA PROSTATE WAS REMOVED 2001 AND CAME BACK IN 2016...… I HAVE. HAD 39 RADIATION THERAPY TREATMENTS AT 21ST CENTRY ONCOLOGY LOCATED CONWAY S,C IN REMISSION AT PRESENT TIME VER I would not recommend this treatment center they do not give enough information about the treatments...…………………SILVER.........
Hello, I've done all I can to find out what's a best fit for medication for my ADHD. Specialist-therapy-my sychiatrist-dna testing. After a yr & 1/2 of different meds. I'm on ER ( extended release) 3 ×'s a day. It helps but I know it should be better.
I guess my question is, why does this happen? Why hasn't any meds. Been created for me & others like myself? The dna test was helpful to some degree.
It also was not accurate enough & I tried meds. It " suggested" those weren't for me. I wish it worked for me as it does in a "regular" ADHD person. I don't like having to take it , never mind 3×'s a day. I tried to go without for yrs at different times in my life.
I don't work that way.😭 Seems as long as this has been around. There should be more info. To help us understand. Thanks
Hi Laura and All, I was reading what people suffer from and although I have had Epilepsy since 14, puberty, and at 63 I had an SAH 4 ..I feel so lucky just felt I had to put something down and to the person who has COPD , my Brother has it also and he sings a lot and hearing the music still coming from him makes me so happy and opens his chest. So All who are suffering Good luck All and Bless this site xxxx
I would like to know how to live and cope with Interstial Cystitus and IBS. There seems very little help out there for both osf these debilitating illnesses.
I have multiple health problems, but I’ve just been told I now havePBC does this sound familiar to anyone as I was told I have it and given a thick leaflet to read ??? I have no idea what to expect and what I’ve tried to find out actually frightens me
I'd like to hear from cancer survivors. My mom had lung cancer. Specifically want to know about coping with treatments, and how family members can help.
Also, always looking for relevant and educational advice on anxiety.
I would be interested in learning about treating muscle cramps and joint pain. As a rookie athlete, I want to learn how I can take care of myself. Since I stay alone, sometimes the cramps and pain haunt me throughout the night. A friend suggested warm water baths. I want to know what more I can do to relax after heavy training sessions. Thank you!
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