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Not sure how to carry on / who or what can help me 🤞

Colleggleton
Colleggleton

Really need some help/advice please 🤞

I was diagnosed with fibromyalgia 3 years ago after 8 years of symptoms and I'm now struggling more than ever. Is it normal for rheumatologist/GP to provide no treatment at all?

I've tried taking amitriptyline and pregabalin (separately for 6-8 months each) and no relief. I paid for regular chiropractic treatment for 2 years which only offered slight relief for a couple of days. Been referred to physio who told me they cant help with FM. GP told me CBT could help but it's not funded on NHS due to FM treatment being 'nonessential.'

I eat a healthy diet - vegetarian and always eat meals from fresh fruit and veggies with help from my partner.

I am struggling to live anything close to a normal life, continue going to work and socialising. I'm 25 and have experienced symptoms since the age of 14 and as the years go by my health is only getting worse.

Please can you give me information on what help you've got from medical professionals? Also, what you've found to help self manage your symptoms?

Thanks so much

27 Replies
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Hidden
Hidden

Hun I am going to switch on hoc coz this tablet does predictive txt even after I've checked and posted.,back In a jiffy.......

Hidden
Hidden in reply to Hidden

see what I mean loads of smelling pistakes!!! Can I ask you which part of UK you live first?

Colleggleton
Colleggleton in reply to Hidden

Hi NurseGladys123, thanks for replying :) I now live in Bath, I recently moved from Southampton. Both my previous and current GP have advised that symptoms should be self managed and no treatment is funded as its non essential.

My new GP however has referred me to a chronic pain clinic which wont give any treatment but can talk to me about how to self manage my pain. I just don't feel too hopeful about it because I've done so much research and tried so many things over the years.

Hidden
Hidden in reply to Colleggleton

Wow thats very negative..I think g.p,s who pass the buck have very little knowledge of fibro, how many doctors are in the practice you have joined? maybe try another one, but you should be able to get referred to either a rhemuatologist or neurologist for help with medication and treatments like occupational group therapy or hydrotherapy, even a physio should give you a sheet of excercises to maintain mobility and reduce pain.

I agree with nursegladys your Doctors does not sound very understanding nor knowledgeable. At present I am on a pain management program for eight weeks. The vast majority of those attending have fibromyalgia without other factors. Without going into great detail we are advised by pain consultants, specialist physiotherapists, occupational therapists, psychologists etc. They look at everything from medications, self help, exercise etc. They then try to find away to help cope with and manage the pain. I was only referred after the rheumatologist had ruled out all possible other conditions and both he and the GP had tried all medication options. Is there a fibromyalgia support group in your area where you could get advice? All the members of my program report a lot of support by their GP, consultants etc. I cannot understand why it is so different in your area. From my understanding a number of NHS areas run pain management programs. Is there one in your area?

Mydexter
Mydexter in reply to Badbessie

Lucky you, I've never been offered anything other than painkillers , it seems every area is different regarding pain clinics, some even suggest that they do not help

I was signed off rheumatology. I am on gabapentin and an anti depressant. I do work but have no social life. I do pilates which helps but its agony doing it. I was diagnosed 4 years ago after a heart attack. I have good days and bad days but still work. Could you try another medication?

You say: "I paid for regular chiropractic treatment for 2 years which only offered slight relief for a couple of days. "

fibromyalgia is a disease without much understanding. So you must develop your own by investigating how you respond to things. You also need to determine what therapies are helpful and what are not. Again by careful investigation.

A tool which is helpful in investigating yourself is medication and mindfulness. Meditation to help quieten the mind so that you can observe yourself better (mindfulness).

It is likely that no one therapy will be effective. I can think of sound reasons for this. You have tried chiropractic and found slight relief for a couple of days. But no long term relief. This does not surprise me.

A lot of people look for some sort of disease. Perhaps it is not a disease but the brain issuing faulty commands to fascia and muscle. If this is so you need to learn to issue better commands to fascia and muscle.

The first international conference on fascia was at Harvard Medical School in 2007. Many Rheumatologists will know nothing about the complexity of fascia.

Google "thomas myers fascia"

Fascia: What it is and Why it Matters by David Lesondak is a good book on the subject.

I have done a post called "nerve cells work mechanically rather than chemically"

healthunlocked.com/fibromya...

This post gives a model from physics to helps explain many things about nerves that the medical model fails to do.

It is worth having a look at this which discusses Alexander technique. As part of my management regime I do both McTimony chiropractic and Alexander Technique and T'ai Chi.

youtube.com/watch?v=nZQFdh4...

One of the things with fascia is that the layers can stick together, Movement and keeping moving will help prevent fascia layers sticking together.

The following on youtube discusses moving meditation. Which you may find helpful.

youtube.com/watch?v=_IFvabl...

Worth looking at Feldenkrais

youtube.com/watch?v=Ii17BZD...

Hi I see you tried amitryptaline which I tried to and it didn’t work, I then tried nortyptalyne which made a big difference so can you ask to try another anti depressant?

As for management, apart from tablets I don’t have any other support from the healthcare system.

It’s so hard have fibromyalgia and having to cope with work and life in general. We are often dismissed as people think we are lazy and making up excuses, god these people should live in our shoes for 1 day as I am sure they would change their perception of fibromyalgia.

Maybe you could have a look at changing your GP as you really need a more supportive one.

You will get lots of good advice on here too x

I can’t believe that this is how many of you have been treated! I have had Fibro for many years- 20+, and not once have I been dismissed like this! I’m fact I’ve had more issues the last couple of months trying to get my thyroid and B12 optimally treated!!

Talking of which, have you had your thyroid checked? A lot of the symptoms correlate with each other and overlap. Also if you are going to get this checked out, ask them to check for Folate, Vit D and Ferritin levels too! And do it first thing in the morning before eating or drinking!

I currently take Pregablin, Naproxen and Duloxetine, for my Fibro, I’m unable to take Gabapentin due to other meds for a different condition. Some people just can’t tolerate amitriptyline.

I can’t believe they said that CBT wasn’t funded because it’s for fibro- that’s crap, because I was actually offered it specifically for my fibro about 2 years ago and I told them I didn’t want it - only because I knew the problems I was having at the time weren’t down to my fibro, and I was right!!

Hope you get some help soon. xx

Mydexter
Mydexter in reply to LuluCops

It seems to be it depends what area you live in, I've never been offered CBT, not that I'd particularly want it , or to go to a pain clinic, nothing but painkillers

Hi there,

I think your GP is being less than helpful. If you live in Bath, they have the famous “Mineral Water” hospital, “The Min” proper name The Royal National Hospital for Rheumatic Diseases. It is in the process of relocating to Bath Royal United Hospital, (RUH) into a brand new modern unit.

They run Fibromyalgia Coping Skills Courses, they also have a warm mineral water pool where they do Hydrotherapy, and if you do this course, you will have sessions with a Physiotherapist in the pool.

I have been on the course and it is most helpful, and it teaches you how to manage your Fibromyalgia.

Unfortunately with all the cutbacks in the NHS and the Opioid Crisis, the GPs in this area have been very aggressive in not prescribing Opioids. They do have a duty of care however to their patients, and in your case, I think they have forgotten this, and you need to either point this out, or find a different GP.

In the Meantime if you Google The Royal National Hospital for Rheumatic Diseases, you can find out all about it for yourself.

I hope you can get some help soon, as it doesn’t seem that you have had much help up until now.

Good luck.

GP. 😊😊

No surprise that the elephant in the room has been ignored.

The very first thing you need to do is stop following a vegetarian diet. You're starving your brain and your body by eating just plants. Stop or drastically cut down on fruit—stick to berries and avocado. You're denying your body what it needs/CRAVES to be healthy. You have to see that this is true if only because of the fact you're not getting better.

I'm sure you've read about how healthy vegetarianism is and how it saves animals (no it doesn't, as animal habitats are destroyed to clear land for the purpose of growing crops). If you eat margarine, stop and eat butter (Kerrygold).

By following a vegetarian diet you're increasing the inflammation inside you. You need fat to nourish your energy-hungry brain and to put out the fire inside you. A bowl of cereal isn't food (unless it's Magic Spoon Keto cereal) it's inflammation. An omelette is food. A lettuce leaf spread with butter and filled with chicken and salt and herbs is food. A fruit smoothie is not food it's inflammation.

Colleggleton
Colleggleton in reply to Gelfin

Thanks for your response but I've been vegetarian my whole life (veggie not vegan so eat plenty of eggs and dairy) and I've had no health issues until this diagnosis.

In my opinion, my diagnosis is likely to be linked to my fathers multiple sclerosis (who ironically is the only one of my parents who eats meat... not suggesting that's why though lol!)

Please check with your GP that your blood results are good, there is nothing wrong with a vegetarian diet, as long as you are balancing the nutritional elements correctly, that means eating legumes (beans), as well as nuts. you need to source calcium as well.

A nutritionalist can help you, especially if you don't eat dairy. There is a lot of calcium in dairy.

Colleggleton
Colleggleton in reply to Midori

Thank you, my blood work came back all absolutely normal apart from low b12 (not deficient just lower than normal) which I now manage with daily vitamins and more leafy greens.

I've always eaten eggs and dairy but since my diagnosis I've been particularly careful to fit in plenty of legumes, nuts, calcium, and protein rich foods.

I am going to get my bloods rechecked though following some of the above recommendations.

Thanks again for responding!!

Midori
Midori in reply to Colleggleton

Glad you are well read about your Vegetarianism. I would go veggie, but I have a deficiency which means I must have some meat in my diet.

I totally agree with your reply. Very narrow minded.

Thanks for your response. It's very narrow-minded of you (and quite funny and worrying) that you link to a website that sells supplements. Why did you choose that particular page on that site to link to -- because you agree with it?

Re: "I think that's a bit narrow minded, not everyone is the same with this illness."

Did I say or imply that everyone is the same?

I responded to one person, using the small amount of information given.

I was going to give you the same advice as Greenpeace above about asking your GP to refer you to the Royal National Hospital for Rheumatic Diseases in Bath. It's a renowned centre of excellence for Fibromyalgia. I live in Gloucester but was referred there in 2012 and did the Fibromyalgia Coping Skills course in 2013. It was very, very helpful. There is a follow-up session a few months after the course to see how everyone is getting on and all except one person was much better. The lady who hadn't improved was the one taking the most medication. Those that had decreased their medication were all doing much better. Would highly recommend the course.

Always a pleasure to interact with those who accuse others of doing things that they themselves are doing but don't realise it.

"I think you should check out the real facts about what a healthy balanced diet is."

Please do tell me how you know what a healthy balanced diet is. You chose to link to that page (I read it three times, thanks) because you agree with the information. That is your biased opinion.

My opinion is based on reading a wide variety of information from many sources, interacting with hundreds of people over the years; with the addition of common sense and logic.

May or may not be vegetarian? The OP stated vegetarian.

I didn't assume they were on an exclusively plant diet. I know that many vegetarians add eggs and dairy BUT dairy is nasty stuff, particularly cows' milk; and unless eggs have a deep yellow/orange yolk AND are eaten in quantity (4+) every day they are not worth noting.

Fruits and vegetables are bad for our health, even discounting the pesticides. Most vegetables are slightly toxic and some are more than slightly. I still eat some: cauli, broccoli, mushrooms, onion, beetroot, cucumber, lettuce, cabbage.

Most beans are difficult to digest (but we should still eat them?) and take minerals out of the body because they don't have any of their own. If beans are so healthy, why is it recommended that they're soaked first to reduce the phytic acid?

Fruit consumption has reached ridiculous levels. Fructose is still sugar and causes inflammation. I did mention sticking to avocado and berries but you chose to ignore that.

Oh, and Kerrygold butter because the cows are grass-fed. Not 100% certain of course but it would be a bit silly for the producers to lie about that.

desquinn
desquinnAdministrator in reply to Gelfin

Can we keep the replies a bit more polite please.

No diet has been found to be related to fibromyalgia. Changing your diet however is something you can do which is within your control.

We have many advocates and proponents of various diets and lifestyles but at present no correlation is found.

Fibromyalgia does not have inflammation within the body.

Beyond the above I find it very strange that fruit and veg are described as being dangerous. Counter to general health guidelines.

You've been vegetarian your whole life. My narrow-minded view is that's the problem. You've had symptoms since you were 14 and your health has been getting worse ever since. Your body is doing its best with what you're giving it, but your diet has been and still is too restrictive.

Continuing with my narrow-minded view... Multiple Sclerosis isn't hereditary and not connected to eating meat. Sugar, refined carbs, lack of good fats, and a diet where sugar and fat and protein are combined contribute to MS and other diseases.

Eating plenty of eggs is great: what colour are the yolks? If not deep yellow/orange then they're from factory-farmed chickens and are nutritionally poor.

I won't bother mentioning avoiding bread (including gluten-free) and grains lest the 'grain brigade' descend upon this thread. I wish you well. All I ask is that if your health continues to deteriorate, you'll give some thought to what I've said.

harmony2
harmony2 in reply to Gelfin

@gelfin

Please consider less sarcasm and more gentleness. A possible method: Maybe share what has helped you without critical comments about others’ approaches.

One aspect I enjoy about this forum is the respectful nature of posts.

Thank you for helping keep this be a safe and helpful place,

Harmony2

Mydexter
Mydexter in reply to harmony2

Good reply, respect

Cbt is a great tool to help you with our fibro friend but u must have an open mind and put the work in to benifit from it yes it is available on the NHS so please go back to your gp surgery and ask them to refer you if no luck go to the practice manager and complain about your gp he could be staling u by trying to save practice money as he don't see u as urgent please. Persist and get referred. If u still have no luck go to the NHS board in your area guys and St Thomas hospital recommends this treatment for people with fibro I know I've done it myself. Good luck let us know how u get on with gp and Cbt Angela gental hugs

Thanks so much to everyone who has responded, you've given me so much helpful info to go away with and research/talk to my GP about!

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