My husband

[philippa61]

Hi my husband has just been diagnosed with fibromyalgia apparently caused by inflammatory arthritis. He has been ill now for just about two years and is depressed and angry. I would appreciate any tips you can give on how to help him cope. Many thanks

[KurtN]

Hi, sorry to hear of your husband's condition, and welcome. Depression and anger are normal reactions to this disease, he is not who he was and has to adapt but he's lucky to have you help. Tip#1= Pacing (which is why this is short).

[Hidden]

They have no idea what causes Fibromyalgia- there are various theories out there, but nothing more. I would suggest going straight to YouTube. If one channel is too dry try another. And try Sarah Myhill and The Optimum Health Clinic channels for protocols that have made people significantly better. There is no treatment currently available on the NHS to treat the cause. The NHS approach is to suppress as many symptoms as they can using a package of drugs, and possibly some exercise and counselling. This is complicated and the drugs have to be played around with. They won’t mask all symptoms.

I have had a diagnosis of Fibromyalgia for 30+ years, and more or less gave up on the drugs as they are notorious for side effects , and lots of people have difficulty functioning on them. I eventually had to take early retirement from my teaching post.

Go to YouTube, as there are some positive stories and helpful information out there that you won’t get via the NHS.

I’m sorry to hear your husband is frustrated and angry. It’s how most people feel, as it’s so hard to deal with Fibromyalgia symptoms. Good luck.

[desquinn Partner Volunteer FMAUK Trustee in reply to Hidden]

That's untrue. They do have several ideas what may cause it but there is no certainty as yet. You are continuing referencing Sarah myhill which has no empirical evidence supporting her theories but regulatory bodies have held her to account for giving bad advice! She "exploited patients’ lack of medical knowledge by arousing ill-found fears for their health."

The NHS approach is to use medications and alternate treatments that have some or good clinical evidence behind it as opposed to theories or anecdotal evidence. RCTs are required for good evidence base.

Other options may help some people Optimum Health Clinic and diets and supplements are within a patients control so definitely something people can try and see if they help. But please remember the science behind weight loss diets working as well. The body reacts to change has a positive reaction and then settles sown once more and weight loss tails off. So not all effects are simple cause and effect.

[Hidden in reply to desquinn]

What’s untrue?

[Hidden in reply to Hidden]

The two treatment protocols I mentioned ( both very similar) have some very solid empirical evidence behind them. Both Sarah Myhill and The Optimum Health Clinic have been driving research and pushing forward campaigns for government support. They have several prominent political figures on board to help spearhead a motion to get the NHS to reappraise the situation.

What I am flagging up is not some vague alternative medicine that someone dreamt up, but some well researched treatment. The problem is that the lab work needed for these treatments is expensive, and currently beyond the pockets of most people.

[desquinn Partner Volunteer FMAUK Trustee in reply to Hidden]

not seen any cited research that is RCT double blind and ethical distance with a multi site component and repeatable.

I know from their website the optimum clinic is working with university of surrey but I was not really commenting on them specifically. If you look at research on gabapentin and neuropathic pain for example and I am just picking that at random you will see many studies on pubmed and similar.

[Hidden in reply to desquinn]

I can only answer you by asking you to check what you have read. I have several other conditions, including Coxiella Burnetti, and as a result both Northwick Park and Porton Down laboratories have had to be involved in my care, so unfortunately I am well aware of randomising tests, double blind testing and so on. This is why both Sarah Myhill and The Optimum Health Clinic are pushing so hard for government help and intervention.

At this juncture I am not trying to hard sell either, but to put what treatments are available out there. To simply flag them up for people who may not be aware that there is more to treatment for Fibromyalgia than the the NHS is currently able to offer.

[desquinn Partner Volunteer FMAUK Trustee in reply to Hidden]

I appreciate the motive behind your suggestion but it may help some and could be of use to others but when suggesting a dr that has got previous history of flouting the rules and been sanctioned for it then I think that also requires mentioning.

What I would also urge is for anyone considering looking at alternative treatments then look for the evidence and the studies behind it. Unfortunately there are many claims based on pseudo science and poor science and being help up as fact and proven course of treatment.

Examples include sugars, cough medicine, retrovirals, stem cell treatments, things from your herb garden, water, meat diet, vegan diet, lack of this diet, manipulation and many other things. Some of which the proponents have been on here and elsewhere accusing people of killing others or allowing them to be harmed for not telling people the truth.

I am not exaggerating this and my advice is treat every claim with a pinch of salt, speak to your GP and consider the evidence and think twice before choosing a path that your GP is not comfortable.

The NHS approach is slow and could be a hell of a lot better but clinical trials evidence is not a bad thing and is the only thing preventing disasters like thalidomide from happening once more.

Sorry for the short reply earlier as I was heading into a meeting.

[Hidden in reply to desquinn]

Interestingly,as I write a reply I’m sitting in The Royal Hospital of Integrated Medicine. An NHS Hospital.

I have been treated here with homeopathic medicine. I’m not sure it’s helped, but the point I want to make is that it I was given homeopathic medicines with no proven efficacy. No proven studies. No proven track record. So please don’t believe that everything given by the NHS has been thoroughly tested. It hasn’t.

As regards Sarah Myhill ‘flouting the rules ‘ to quote you, it must have taken a good deal of courage and determination for her to leave conventional medicine, where she had a reputation for excellence over many, many years, and to tread her more unconventional pathway.

It is people like her who turn the medical tide.

All her treatments are based on numerous lab tests for each individual, at independent laboratories (ie not run by her), that have to comply with proper safety standards. Indeed, many are used both by private and public healthcare systems. Any treatment protocol she uses for any patient is based on what these lab tests show. I, for one, applaud her ground breaking work, and the rigour of her treatment protocol.

As I repeatedly say on this site, it is not my place to advocate any one treatment, but to offer what I have discovered on my journey through 30+ years of living with Fibromyalgia. I am old enough to have been diagnosed pre the Internet, when access to information was difficult and laborious. To me it makes perfect sense to use the Internet - particularly Youtube because it is so accessible - and find out as much as possible about what might be out there. Very carefully, of course.

[desquinn Partner Volunteer FMAUK Trustee in reply to Hidden]

there is a move now against the homeopathic treatment within the NHS for that very reason and the lack of perceived efficacy. Also I believe the disproportional budget was part of it.

However, there have been many positive comments on the way that these hospitals handle bedside manner and patient interaction which is definitely something that could be improved elsewhere.

My comments about sarah Myhill are not personal experience but quotes from the GMC and elsewhere.

Treatments should be proven to not cause harm before they are found to help people. People are desperate for answers and they do need help but desperation means people can be exploited or harmed and that is why I am trying to provide some balance. People may benefit from looking at what your suggesting but at least they have more info and are not surprised when their GP may advocate against it.

[Hidden in reply to desquinn]

They are still offering homeopathic medicines at The Hospital for Integrated Medicine ie they are still prescribing them, but the patient now has to pay for the medicines. Compared to the cost of drugs they are relatively cheap.

I was actually under Dr Peter Fisher, who was physician to the Queen. However, there was a terrible traffic accident last year on High Holborn, as Dr Fisher was cycling to work, and tragically he died at the scene.

I am not an advocate of homeopathy, as there is almost no evidence of it working, but as it was offered to me via the NHS I felt I’d nothing to lose, and gave their integrated programme a go. I also had acupuncture there, physio, and dietary advice. The dietary advice was very stringent. Very clear. Very good. No sugars (including fruits), very small amounts of complex carbs, and mostly plant based, which is more or less what I was doing anyway. I think the importance of diet in Fibromyalgia can’t be under estimated. It supports the body, which goes without saying. If you overload a body that’s not functioning properly, with sugars and fast foods, and so on, you’re not really helping yourself. Just common sense. So looking after yourself becomes a priority. As with moderate regular exercise.

The NHS has always been drug driven, but things are starting to change, and my experience, with various GPs when I’ve raised the topic of alternative treatments has been them giving me a green flag. I’ve moved around a fair bit so had to change surgeries quite often, and not a single GP has responded negatively. My current GP certainly supports me in what I do outside conventional medicine - hence her referring me to the Royal Hospital for Integrated Medicine - her idea, not mine!

And more and more Primary Health Care Trusts are now testing for and realising the importance of various vitamin deficiencies, and not just seeing supplements as an ‘add-on’. And many surgeries are now advocating exercise programmes, too.

It’s slow, but we’re moving in the right direction. Functional Medicine is gradually finding its place in the NHS. It’s just a shame that the colossus that is the drugs industry still plays an uneven role, and is money-making as much as it is problem solving... but that’s a whole other debate for another time...

[desquinn Partner Volunteer FMAUK Trustee in reply to Hidden]

"That's untrue. They do have several ideas what may cause it but there is no certainty as yet."

[Hidden in reply to desquinn]

Sorry. Don’t know what this is in reply to!

[desquinn Partner Volunteer FMAUK Trustee in reply to Hidden]

that was a reply this morning to your question about what was untrue. It was referring to you saying they had no idea what causes fibro.

[Hidden in reply to desquinn]

Okay.

[phlebo123]

Hello Philippa, sorry to hear about your husband s diagnosis. It is only natural for him to feel depressed and angry, because he is grieving for his previous life. With your help and support and encouragement, hopefully he can come to terms with pacing himself, doing things he enjoys in small bursts and taking regular breaks or rest periods inbetween. Find things he enjoys doing, I take small walks with my dog, the fresh air and nature, and saying hello to other people helps to improve my mood.

May I suggest that you both take a look at an excellent website called paintoolkit.org which helps people suffering with chronic pain put into place a network of help and achieve a reasonable standard of living and good quality of life (the section entitled Tools) is very helpful and informative.

There are also local support groups for fibromyalgia sufferers and their partners, you will find out more about these on fmauk.org

If you or your have any other questions, just ask on here, take care x

[Hidden in reply to phlebo123]

Thanks for flagging this up so well - you have a very warm and clear way of explaining things...

[penny]

Sorry to hear this. Have you read about the work of Dr. Coimbra who has been successfully treating RA with high doses of Vit D (as well as other autoimmune diseases)? Dr. Coimbra is not well known in this country but feted in his own.

[Hidden in reply to penny]

Thanks for flagging this up. Much appreciated.

[skit]

I am going to suggest there is not one size fits all when it comes to Fibro. The anger and depression side of diagnosis is clearly a set of emotions that need to be worked through before acceptance and reflection come to bear. Physical support groups as penny mooted are fine for some but not others. I personally get a lot out of attending,hearing other people or carers say how Fibro is affecting. When it comes to technology and possible causes and 'curers' we are mostly adults on this site so should decide what we think is sensible. Eventually we go to our GP who is part of the NHS. Whereever you live ask the question on the forum if anyone has a good rheumatologist for starters. Get hubby involved in the process. There are some hospital led sessions on living with Fibro and some public health courses on self management of chronic long term conditions both are good news to investigate.

[Hidden]

Yes I totally agree with you! Sadly I lost my partner a number of years ago, and couldn’t have children, so now on my own. I also have 90 something parents... There are a lot of people out there in very difficult situations, be it with a partner who is also ill, as a single parent with a diagnosis of Fibromyalgia, or like me, entering older age. It’s a tough call. But I like what you’ve written - you’re right, there is no ‘one-size-fits-all’.