Fibro Clinic Guys Hospital

UGH...red tape!

Have you tried Lyrica- pregabalin or Neurotin -gabapentin

both quiet the nervous system down...I have tried both and prefer the Lyrica-pregabalin.

So sorry,

judith

Hi Judith

Thanks.

Tried everything and so far have found nothing that will give more relief than side effects.  Just got to learn to live with it and hope I don't get too many flares.  Managed so well for the last couple of years but been very stressful the last four months so it was bound to flare sooner or later. Fibro the condition that just keeps giving

Did they explain why theyou won't give you a referral?

No need because apparently they can't do anything there that my GP can't do for me.  I read it as doesn't warrant spending NHS money on a referral. Bit disappointed but hey ho will try for it again in due course.   Wouldn't mind but hardly ever visit GP in fact hadn't realised the old one had retired some 5 years ago so not as if I am always knocking at the door! Suppose they have to budget and balance the books.

Sorry to hear that. I know that you use a more natural approach too. Not like you're drug seeking.

You use a lot of the same supplements and remedies I do. I was doing well until a recent flare. It's frustrating when we are just trying to get some relief but they rather just drug us cause it's cheaper.

Keep me posted hon. Hope you feel better soon!

You are right about using cheaper drugs first. A friend of mine was given a variety of drugs before getting one that suited her. When she asked her consultant why she hadn't been given it in the first place he said it was the most expensive of the options available.  I understand they need to budget but when one hears of all sorts of cosmetic surgery being done on the NHS it's hard to understand why chronic problems are ignored. Perhaps they hope that we will just get fed up and go away and find our own solutions.

Here in the states they don't recognize holistic healing or homeopathic remedies. That's why I said to go to the aims clinic,similar to your clinic, would cost me so much out of pocket. It was cheaper to give me Lyrica and Cymbalta than for me to see a nutritionist, chiropractor, physical therapy, acupuncturist and rheumatologist. That's why so many people here are addicted to opioids. It may be easier to pop a pill but doesn't fix the problem just masks it.

I pay for chiropractor, physio and hypnotherapy those are not available on the NHS -  I did get 3 sessions of physio on NHS but it is very limited and as I was in the middle of a flare I couldn't do what the physio wanted me to do so a bit of a waste of time.  My chiropractor is good and understands exactly how much pressure I can cope with.  I also cover the cost of all the supplements and anything else I need to make life that little bit easier by way of equipment.  Seems that here in UK the General Practioners just want to give opiods and anti depressants which mask but do little to help in the long run.  Think it is a case of finding out for oneself what works and what doesn't.  I just feel cheated in that I have worked for decades and paid into the national health service and when I now need a little bit of help it's not there.  Still never mind - onwards and upwards.

Is there another Gp you could see ?

My understanding of the Guys clinic is that it's one visit and then they advise your Gp about future management. They may suggest things that your Gp isn't aware of ,so is it worth asking again.

I'm gonna be cheeky here and ask what you've found helps you ?

I'm really struggling with sleep, headaches,joint pains and low mood .Any tips? X

Not cheeky at all, That's what we are all on here for, to help each other.

Sleep - now that's a difficult one but hot bath with epsom salts/dead sea saocolt helps. Memory foam pillow and sometimes I find putting a pillow between my legs helps with the hip pain   Joint pains - Bio Freeze. Vit D helps if you are low in it. I take 20,000 iu every other day. Remember to get levels checked by blood testing as you don't want to overdose on it.

I use other supplements too like L-Carnitine, B12, Tocotrienols and CoQ10.  Using only fresh foods, nothing processed and I am gluten free. Good days cook several batches and freeze it so it is ready for the not so good days.   Slow cooker - this weather wouldn't be without it. Throw everything in and leave it to get on with it -  brilliant.  Low mood - I find just making that extra bit of effort to get outside helps. I may not want to walk the dog or feel like being sociable but have to say just getting to the park and seeing a happy dog is a great mood lifter.  I don't walk far, I just take a ball and the dog is happy.    With regard to Guys will just go along with the GP for a while and if his suggestions don't work will ask again.  Keep warm and remember Pace Yourself and learn to say "no" when asked to do something you know won't do you any good!

Your positive attitude will bring you through

hugs

judith

Are you all allowed topay the difference on cost and obtain the name brand?

Not that I know of.  I have found that Doctors dislike anyone challenging them or being more informed than they are themselves  General Practioners can't possibly know everything about every condition so I would have thought that having a patient who has researched and is knowledgeable about their condition is not a threat it should be treated as someone who is wanting to take an active part in their own care.  I remember when I had a sick dog I researched the condition and found a specialist I thought would be able to help. My own general vet was more than happy that I had researched it and knew where I wanted to go - saved him a lot of time trying to find the right referral centre.  It was no reflection on him but experts/specialists are just that - specialists!

Thanks, that's great .

I'm gonna look into the supplements & try the bath. I'm not having problems sleeping due to pain just seem incapable of falling asleep.

It's so frustrating.

Can I ask how you were diagnosed?

My Rheumatologist did the tender point test on me but I don't have enough for a diagnosis.

I do have lots of other symptoms but I just turned 50 and am wondering if it's hormones.

Whatever it is I just wish it would bugger off ! X

I realize that Lyrica is not an option. I was prescribed opiods and anti inflammatory drugs first.

Just saying in general doctors are more willing to prescribe drugs rather than look into other ways of treating. I had sensitivity and side effects from many medications that were prescribed. I don't mean to offend anyone who has had success with the meds but I can not take them and had to fight to get treatment that did not include them.