New, Amitryptiline and rheumatology referral

[sophiesuns]

Hi, I am new here. I have had a lot of symptoms for 5 years now which my GP keeps saying is stress. I think I have Fibromyalgia because I have most of the symptoms, I have them all the time but have periods of time when all the symptoms flare up to be a lot worse and I get clear blood tests which the GP has run 3 times now. I've just been back and questioned why they are not considering this is what I have and basically I have been told that I am old and tired. I'm 40 and a carer for my autistic sons and I feel like they are not taking me seriously because the assumption is that all my symptoms are caused by the stress of my caring situation. I asked for a referral to rheumatology but was told that the criteria for that is that I have had to have tried a course of Amitryptiline first. The problem I have is that my sons are highly vulnerable and I need to be alert from the moment I get up with them at 6:30-7ish until when they fall asleep, 11pm-midnight ish and to be able to care for them throughout the day. The GP has agreed to try and get a referral without but my question is, is this the normal process of referral for Fibro, I feel like I'm being forced onto meds to gain access to answers?

[BlueMermaid3]

Hi there

Welcome to the forum

I have not heard of this before. However, if you do get to see a Rheumatologoist and you are diagnosed it is highly likely that you will be prescribed Amitryptyline and then referred back to your GP.

That is what happens with most people after diagnosis.

I really do sympathise enormously with your situation and wonder what you hope to be able to achieve by having a diagnosis?

The reason I ask this question is to see if I can help you in any way.

Amitryptyline does help with sleep, pain and low mood and provided you take it by around 6pm you shouldn't feel groggy the next day.

Take care and best wishes.

Lu x

Admin

[sophiesuns in reply to BlueMermaid3]

Hi, thanks for the reply. I want a diagnosis for 2 reasons.

First one is that I just feel lost not knowing what to do to help myself. Do I rest/do I try and improve my fitness/do I change my diet/do I take supplements and if so what? It's hard to know what to do when you don't know for sure what the problem is. I have cut out gluten and that has helped my nausea a lot.

The other reason is that whilst my sons have a reasonably good care package of respite, I don't feel like social services take my health seriously when we are talking about our family's needs because I can't tell them what is wrong. Actually, when I tried to explain to the manager at their respite care unit that I had hip pain that meant I am sometimes unable to walk or keep up with them, he just laughed! I think people see that I am still able to care for them on a day to day basis so think I'm exaggerating but the reality is that I have no choice but to get on with caring for them when I am in pain because there is no one else to do it. My husband does care for the boys with me but because it is the 2 of them, we always need the 2 of us around and actually in other places they have 2 staff each so we are doing a lot more than their paid carers are expected to do. (They are 14, non-verbal, incontinent and have challenging behaviour).

Do you think if I took the Amitryptiline at 6pm I would fall asleep during the evening? I change their pads, sometimes beds and give them sleep meds at 9.30-10pm, sometimes 11pm too. I have been quite sensitive to other medications in the past - I wouldn't take piriton if I was driving for instance and I can't manage their morning routine well if I've had a cold and taken night nurse! I have 2 nights respite a fortnight so could try taking it then but I read that it could take quite a few weeks to settle down which is what worries me.

Sleep problems is the one symptom I don't actually have but because my sons don't sleep and haven't done for years, I feel the fact that I am already sleep deprived may mask that. My biggest issue at night is restless legs and foot pain - I can only sleep on my front with my feet hanging off the bottom of the bed!

Thanks for your help

[BlueMermaid3 in reply to sophiesuns]

Hi again

One thing I would warn you of, which I don't know if you are aware of, is that not many people, including some doctors, either believe in, or have any idea what Fibromyalgia is.

The only reason I am telling you this is because I don't want you to think that it will change your life enormously being diagnosed. However, this is just my personal opinion and I am not saying this to be horrible, I just want you to know that Fibro is still very much under the radar and misunderstood.

I have had Fibro for many years, and have only met 2 people that actually know what it is!!

It is an incredibly hard condition to try to explain to people, although I take your point that you would be able to say that you have been diagnosed.

I want to be as honest with you as I can. Many of us who take Amitryptyline take it around 6-7pm to avoid grogginess the next day. It is not like a sleeping tablet as such. It kind of helps you to stay asleep.

I don't know how you would react to it. You could start on an extremely low dose and see how you get on. You can take between 10mg per day up to about 175mg so you can see the difference in dosages. You may even be able to start on 5mg.

Have you tried any other meds for Fibro? If you find yourself falling asleep on Piriton I personally think you could really struggle to find a medication that wont make you feel drowsy or fall asleep.

As to Restless Leg Syndrome there is no cure or tablet for it to my knowledge. It is something that many members of the forum suffer from and struggle with every day.

I desperately want to be able to help you. I am not being unkind in the slightest. I just want you to go into this with your eyes open as to how things could be.

I really hope that makes some sense to you? If you'd like to ask me anything, please do. I want to help you as much as I can.

It must be incredibly hard for you looking after your sons. I used to work as a Special Needs TA so I have some idea of what you're up against. You must be absolutely shattered every day.

Lu xx

[Janicej in reply to BlueMermaid3]

Hi there I just wanted to make you aware that there is tablet that can be prescribed for Restless legs, I am taking PRAMIPEXOLE for my restless legs an have been for a few years, there are other meds as well! Sorry to keep this brief but I have multiple health probs Ben under the care f a Rheumatologist go 8 plus years and at the moment not so brill so I just wanted to mention my experience of R L S. Although unwell at the min, knowing how bad the condition can be I wanted to help with imfo RE PRAMIPEXOLE.

[Sorebones]

I was referred without trying Amitriptylene first. But in fairness it may be different in different health authorities. I suggest you give the rheumatology dept a call and ask. Can't do any harm and will give you the answer you need. You can take an alternative med like Gabapebtin which doesn't have the sleepy factor 🐸

[chocolatemuncher]

I eventually got referred to the rheumatologists after having loads of blood tests, referred to physio who rejected me based on blood tests! Then referred someone where else as possible Chronic Fatigue, which again was rejected and so finally referred to rheumy! I was not prescribed any medication by my GP at that stage.

I would keep pushing for a referral. If it's within your mean financially so could consider going private initially?

[peck]

Hi and welcome to our forum.I live in the US and was diagnosed by my gp.I am treated now (dia. 1999) by a p sin dr.. as in the US to get meds. I take that's how it must be.Peck🐤

[rosewine]

Welcome to the forum. Iam sorry to read your post as I can imagine every day life would be a struggle even if you were fit so it must be particularly difficult as you are a carer for your two sons. Unfortunately many of these drugs do take several weeks to start to ahve an effect and often make you feel worse before they start to make you feel better.

As Lu BlueMermaid3 says starting on an extremely low dose might be the way forward for you. I too have reacted badly to many drugs but my old doctor was aware of this and used to start me on any new drug at the slowest possible dose and gradually build up to something that would help but would not give me too many side effects. Sometimes it is a balance of not being on the highest dose of a drug and having very little pain but being on a lower dose which does help but most of the time makes the pain at least manageable.

Sometimes as others have said having a word directly with the department at the hospital brings results. I feel in your circumstances they should make an exception. Do let us know what you decided and how you get on.x

[ErosisSore]

Hi sophiesuns

I too have not been properly diagnosed with having fibromyalgia and the doctor also put me on Naproxen and Amitriptyline. Thing is painkillers have always affected me more than most people and even though the Amitriptyline help with the pain they do eventually make me go into a sleep like I have been drinking alcohol heavy and the after effects last for 3 days with me. So it's probably trial and error to start with. I only take it when my flare ups are really bad as I told the doctor I'm reluctant to take every day until I have a proper diagnosis and having 2 children to care for as the Amitriptyline makes me very irritable and sleepy. As I found my doctors were not taking any notice of me at appointments I emailed them with a diary of my symptoms with years, months and dates. Today I got a call back to say yes I can be referred to Rheumatology. So hopefully I might get some answers!

All the best Jo x

[sophiesuns in reply to ErosisSore]

I do have naproxen. I'm not sure if I've found it particularly effective though. I'm definitely going to start keeping a thorough diary of my symptoms, I have been in with lists before and not even been given the chance to get to the end of my list without being cut off so email sounds like a good idea! Glad to hear things are starting to move forward for you x

[TheAuthor]

Hi sophiesuns

Welcome to the forum and it is wonderful to make your acquaintance. I have pasted you an excerpt and a link from the *NHS Choices cache on referrals to specialists, and there is no mention anywhere that you have to have a course of medication to get your referral? It only says a referral is based on need:

*Access to NHS specialist treatment is via your GP and is based on need. You can ask for a referral for specialist treatment on the NHS. You will need to see your GP if you wish to be referred to a specialist in a particular field, such as a surgeon or a gynaecologist (a specialist in the female reproductive system).

All your medical records are held by your GP, who understands your health history and treatments better than anyone. Therefore, your GP can decide whether a specialist referral is necessary and, if so, recommend appropriate hospitals or clinics.

Under the NHS e-Referral Service, you can choose the hospital or clinic where you would like to receive treatment, as long as your GP feels that you need to visit a particular hospital or clinic to receive appropriate medical treatment.

If you ask your GP to refer you to a specialist, they will probably suggest that you try various tests or treatment options first to see whether your condition improves. You cannot usually self-refer to an NHS specialist, except when accessing sexual health clinics or treatment in an accident and emergency (A&E) department.

A specialist will only see you with a referral letter from your GP. The letter will give the specialist essential background information, such as your medical history, and it will also contain details for the specialist to pay particular attention to.

If you wish to see a private specialist, you are still advised to get a referral letter from your GP. However, if you see a private specialist without a GP referral, your GP is not obliged to accept the specialist's recommendations.

How do I get a referral to an NHS specialist?

nhs.uk/chq/pages/1094.aspx?...

It may help to go back and see a different doctor and discuss your situation with them? It may also prove beneficial to pop into your local walk-in centre and scream ''pain!'' as they can also refer you to a specialist! I want to genuinely wish you all the best of luck, and please take care of yourself.

All my hopes and dreams for you

Ken

[sophiesuns in reply to TheAuthor]

Thank you, that is really helpful!

[TheAuthor in reply to sophiesuns]