Can i request to be refered to a specialist

[kissycat123]

Hi after being told 13 years ago my symptoms were all in my head i got on with my life in pain and 2 years ago after my condition which has got to a point where i actually dont even want to live any more i plucked up the courage to go back was sent to see a consulant who suggested i could be fibro he then refered me to a reumatoligist who i seen 2 months ago who was only interested in testing me for athritis which at the time she says i dont think its that all your symptoms are down to your depression. I mentioned fibro to her and she said she would not entertain even thinking about fibro in someone who has depressiion. I am at a total loss at what to do i am pretty sure it is fibro i have does anyone know if i can ask my doctor to be refered to a fibro specialist if there is such a thing ? I sit here in tears just now as i have an appointment with my doctore next week and im terrified as to what to say or do i need help as i can not continue to live my life the way i am every day is a struggle with the pain and my deppression is getting worse due to the fact i am not being believed can anyone advice i would so appreciate it

[rosewine]

Hi Kissycat

I can tell from your post that you are absolutely desperate. Is there anyone within your family or friends you could confide in and perhaps take with you to see the doctor so they could convince the doctor that your problems are not only with depression but are actually physical as well. Can you afford to see a specialist privately or is that out of the question? I can understand what you are saying about your depression being worse because of the pain as it is a known fact that many people wpertress of not being able to live a normal life grinds a person down. Also if you are depressed the pain seems to be more to the forfront of your mind. I have borrowed a book from the library which was complete with a CD called Mindfulness for Health and I have found that some of the exercises or ways of thinking have helped me on those days when the pain is very severe. If you feel desperate at any time you must speak to someone you trust or ring the Samaraitans. There are specialists out there who have a greater understanding of fibro and are more aware of what medications and treatments that can help. Could you ask at your current practice if there is one of the GP's who has a particular interest in fibro as often GP's have areas of expertise or are willing to learn. If you click on the yellow fibro action logo you might find out other links that could help you. I have to go now as it is my Ruby wedding anniversary today and I think my husband won't be too impressed if I spend too much time on my computer but my thoughts are with you. Let us know what progress you makex

[ladytelita]

Hi kissycat. So sorry that you're being treated so badly. Sounds like you need a different GP! And definitely a different rheumatologist. Private might be an idea if you have the money to spare. If not, change doctors and explain what is going on with a list and someone else with you as backup.

Did your depression start before or after the pain started? If it started after then the pain may well be causing, or contributing to it.

P.

[Shadows-walker]

My rumie says they go hand in hand with a chronic illness because you just can't see the wood for the trees , I have been put on anti presents and did not want to entertain depression just frustration look up chronic fatigue raynaulds , and fibro. They go hand in hand ,a referral cost about £250 to go private don't tell them what you think just tell them your symptoms if you are not happy it's your right to be helped we pay there wages at the end of the day and if they are over 30 we and are parents paid to train them as well .

[TheAuthor]

Hi kissycat123

I have read your post with so much pain and sorrow for how you are feeling at this time and what you are having to endure. As the others have said to you in their replies, is there another GP at your surgery that you could go and discuss these issues with? Or is there an alternative surgery in your area that you could register with?

I have pasted the Samaritans telephone number below, and I urge you to ring and talk to them if you ever feel that you cannot go on anymore. If you cannot afford this, they will ring you back if you tell them of your situation.

Telephone: [phone]

I have also pasted you the link for our mother site, FibroAction below. It has so much information about Fibro that you could find useful:

fibroaction.org

I want to wish you all the best of luck with this and please keep us up to date with how you are getting on?

All my hopes and dreams for you

Ken x

[fibro10]

Hi Kissycat123 I Know just what your going threw For about five years i was told I had virus, depression, I was working taking painkillers to get threw the day went to see every doctor in the practice As the joint pains were getting so bad when i got down i had problems getting up again as it started getting pains and if i knocked any part of my body the pain would shoot all over and last for longer than usual even a small knock could not sleep picked up every infection going around he sent me for blood test exrays all came back ok. he said maybe I was working to many hours as i worked 50 hours a week in a babys nursery and all activity were on the floor and on my knees it was a job I loved with brill pay in dec 2011 my cut hours. In May had another infection which was the 4th one that year but this time couldn't shift it could not walk across the room with out being out of breath and in full blown pain could not sleep went back to doctors he sent me to see a specialist who asked me symptoms no examination just take these tables you will be back at work in a few weeks. Guess what I wasn't started getting worse pain in joint i was not haven problems with dropping things, depressed was still off work in dec 2012 work finished me on health grounds,My GP sent me to see someone out of my area as I refused to go back to the same specialist had to travel to it but it was worth it in jan2013 had bad reaction to meds ended up in hospital friend gave me a yours magazine their was a letter off a women on fibro it was as if I had wrote it cut it out and took it to GP it did say younger doctors are more updated on fibro and my GP confirmed this as he didnt know much about it so i changed my GP to the one my daughters go who are younger was best thing I have done as there fully updated on fibromyalia I then picked up a fibro booklet at hospital in the psysio dept you can just take one I filled the chart out in the book wrote a little about my symptoms and gave it to the specialist at my next visit and said that's me. but was told they have to rule out other conditions first. in oct 2013 they said as they had fibromyalia in mind from my first appointment as they had done the tender point test on first visit but had to be sure, Final diagnoses fibromyalia and ostioarthritis if you have to scream and shout change GP its so easy now. Ask friends what their GP like. My old gp I had been with for 34 years so was a bit worried at first about changing but best thing I done. hope you dont give up its your body your the one in pain take someone with you not that you should have to but there has been times were my daughters have come with me because I have been that low everyone needs support at times even a 55years old like me hope my story helpsfibro10

[kissycat123]

thankyou so much to everyone who has replied and your kind words and advice i have decieded to take my sister with me to the appointment and if no joy i will change doctors will let you all know thankyou again x

[Hidden in reply to kissycat123]

Good luck hugs sue xx

[mitziblue]

I'm not sure about what type of insurance you have and the conditions. I went to a pain clinic. If your family doctor thinks it's fibro then he would probably refer you. Hope you get the help you need sweetheart!!!! xxxx Mitzi

[Hidden]

Contact the FibroUK website and see if a fibro expert is available in your area (not all rheumatologists believe in fibro) You may have to travel. The main diagnostic criteria is the 18 pressure points so I am unclear why depression would prevent a diagnosis being made (even a tentative one). Ask your GP for a 2nd opinion once you have found an expert. Fibro causes depression in about 50% of cases so the rheumatologist seems out of order to me.

[Mdaisy in reply to Hidden]

Hello Amythest,

Thank You for your comment. Please may I ask where you read the stastic of 50% of people living with Fibro suffer with depression due to the chronic illness experience rather than being a precursor to Fibro. As I would have actually estimated a much higher figure, if you could please provide the research link I'd be very interested. Thank You in advance.

I wondered did you mean UK Fibromyalgia or FMA UK as to my knowledge there isn't a charity called FibroUK? Thank You for the good advice I asked for a second opinion as the first Rheumatologist diagnosed a Frozen Shoulder even tho' I was experiencing pain in my hips too.

You may be interested in a recent poll we had about Fibro diagnosis;

healthunlocked.com/fibroact...

I look forward to your reply

Best Wishes

Emma

FibroAction Administrator

[Hidden in reply to Mdaisy]

Sorry I meant FMAUK which has a good website. It is well known that a high percentage of Fibro sufferers also suffer from depression. I do not believe that Fibro is caused by depression and my Rheumatologist does not believe that either but I think some Rheumatologists do still fall into the Depression Camp (as I call them). GP's often do. Due to years of conditioning. It is well worth trying anti-depressants but if they don't improve anxiety, pain, sleep disturbances or feeling low or cause serious side effects (as they usually do in fibros due to our sensitive constitution) then make sure that goes on record as being tried and tested. CBT is worth trying and Counselling. Psychological treatments can certainly help to COPE with the condition. But until medical science proves the cause of fibro we must seek out the liberal minded medics and avoid the closed minded ones who believe that fibro is a psychiatric problem.

[Mdaisy in reply to Hidden]

Hello Amythest,

Thank You for your reply.

I wondered if you've seen our website as we FibroAction have evidenced based information on Fibro and have the Information Standard certificate too.

We have the 'All about Fibro' range of factsheets which you can download and print, please see link;

fibroaction.org/Pages/About...

We also have a Complementary Therapies factsheet too;

fibroaction.org/News/New-Co...

May I mention I think you have misread my comment I was saying I think the percentage of Depression post diagnosis would be higher than 50% and as a precursor much less.

Most researchers agree that Fibro is a central processing disorder with changes in the neuroendocrine/neurotransmitter systems (Lindsey Middlemiss Founder & Chair of FibroAction 2009) Fibro is not psychosomatic as you say and my personal opinion is the incidence of depression due to Fibro & the chronic debilitating symptoms would be the causative factor of depression.

fibroaction.org/Pages/What-...

I wondered if you have read a research study stating that 50% or whether this was your opinion, as if you have I would be interested to read the studies you have read.

May I also say that although we need more research into Fibro there are some key findings which have been helpful in regards to treatments. Please see link below;

fibroaction.org/Pages/What-...

Medications such as Serotonin-Norephinephrine Reuptake Inhibitors (SNRIs) & Dopamine Agonists among others for instance. Please see link for more information;

fibroaction.org/Pages/Neuro...

There is currently no cure but with a combined approach & appropriate medications the symptoms can be managed. In In my personal opinion the complications lie when other illnesses are involved and/or chemical sensitivities/allergies make treatment more complex

I hope you find the information helpful, FibroAction are the only UK Fibro Charity with the information standard making up-to-date, reputable & evidence-based information about Fibro more readily accessible and this is at the heart of what it we do.

Best Wishes

Emma

FibroAction Administrator

[Hidden in reply to Mdaisy]

I agree. Had fibro for 35 years and run the gauntlet of doctors and treatments and opinions. I also have more serious health conditions and chemical sensitivity and cannot take SSRI's or SNRI'S (tried several over the past two decades with very serious consequences). My Rheumatologist said that at least 50% of fibro patients are treated for depression. We talked about this in 2012 when a Neurologist offered his opinions about fibromyalgia as a "psychosomatic disorder". Needless to say I made an official complaint which is still unresolved because tI cannot get an apology from the Trust.

[Mdaisy]

Hello Kissykat123,

Sorry to hear you are experiencing such problems, most of of understand unfortunately but it does mean we can try to help as best we can.

I would consider seeing another GP and if you still feel they are dismissive you may wish to speak to the Patient Advice & Liaison Service (PALS) &/or write to the practice manager about the issues faced. Here is some information about PALS;

nhs.uk/chq/Pages/1082.aspx?...

Please can I provide you with a link to your factsheets that you can download and print for reference. You may wish to take them with you to the Doctors if that helps.

fibroaction.org/Pages/About...

For information on diagnostic criteria, please see the changes from 2010 by following link below;

fibroaction.org/Pages/New-D...

In regards to a referral, I would ask to be referred to a Rheumatologist to discuss your symptoms further.

I wish you all the best, please know we are here to listen if you need us and as Ken mentions the Samaritans are available 24/7 if distressed

Sending you strength

Emma

FibroAction Administrator

[Hidden]

kissykcat

i am sorry to read that you feel this way i really can sympathise with you. I have just been to my gp for the results of bloods and as usual all are negative ... everything is clear! so I really do not understand why I am I such pain I actually broke down in the surgery and said I feel like jumping off a bridge she looked at me wide eyed and prescribed Naproxen as initially she was testing for RA apparently my result was 10. something so lower than the 30 ( I do not understand the ratings sorry) I said what about fibro she said that is muscle pain... well I have that too my legs are so heavy I want to cut them off, my neck is stiff I almost fell down the stairs as my left knee gave way on the way out but hey (its al in my mind) that's what I feel like when I go to see her. I don't want to be brushed off with pills I want answers like you. my o/h has said that if I do not get any he will come to the surgery and create a fuss but that is not my way I just want an end to the pain I am crying again as I just cant understand why when every joint in my body is so painful my left leg was so swollen last night that when I took sock off I hade a deep indentation and no contours to my ankle in fact no ankle! I just want to know what does it take to get a gp to listen as it is real pain real loss of sleep and horrendous weight gain (this is the thing she points out as soon as I walk in every time) it is rapid onset too as before it was just elbows but now it is everywhere my lower back was also swollen last night ( I think I will get my o/h to video or take photos when the joints are so bad and I cannot get up out of bed or up or down stairs or off a chair without looking over 100 years of age sorry rant over but I have had enough of pain and at the moment I cannot see anything worth going on for

fieryfairy

[fibro10 in reply to Hidden]

Hifieryfairy just read your reply to kissycat I sympathise with you I am having the same day and night took. I also had problems with GP If you live close to a hospital call in the pyisio department they have booklets their called Arthritis Research UK there is one on Fibromyalgia pick one up fill in tender points chart and at the back fill in a diary in the notes pages take it with you. if you still get no joy change your GP as your banging your head against a brick wall that's what I had to do my old doctors I had for 34 years but when I was'nt getting any were I changed my GP best thing I done I had read in mag that a lot of older doctors will not egnol fibro ask friends and family what their GP is like and do let your other half go with you as there the ones who see you daily not that you should have to let me know how you get on and Good Luck

[fibro10 in reply to Hidden]

O sorry mean to send you can download that booklet on fibroaction.org just in case you cant get to a pysio dep wish you luck fibro10

[Hidden]

Fibro10

thank you so much for you reply I haven't been around the forum for a while as so depressed my feet especially the left one are swollen up so much now it is painful to even flex them I look like I have elephant feet

I will download the booklet thank you and take it to the GP when I see her again on Tuesday maybe she will look at my feet and realise oooh yes they are swollen aren't they but then maybe she will just put it down to my age again ... can win young middle aged or other it is all my age!

[Hidden]

Hi, One thing I have found helpful is to write on the Patient Opinion website about your experience with the rheumatologist - I found that I got a response and then referral and things were suddenly sorted out. It's always worth getting your complaints heard by the right people! I write on there now after any health appointment apart from very routine ones.

[kissycat123]

Thank you to everyone who replied from the bottom of my heart !!!!! i am sorry i havent been back on but the good news is that i got a second opinion from a very understanding rheumatoligist who confirmed that i do have Fibro. im now waiting to see a pain clinic to see what they can do to help. i have also lost 6 stone in weight due to healthy eating with more to go . i am very grateful to you all love and hugs xxx