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Fibromyalgia Action UK
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Who is correct doctor or rheumatolgist?

Hi everyone

About 3 years ago my doctors referred me to hospital as I kept haveing bad symptoms of pain in different parts of my body.The rheumatologist gave me certain exercises and I also had a foot X-ray..She told me that my pain was not arthritis or rheumatoid and that it was fibromyalgia, I had never heard this name before.. So I just took her word for this and took pain tablets when required and she prescribed me with Amitriptyline for night times...Sometime the pain gets very bad in different parts of my body usually at evenings and mornings,At one time I could not put weight on my left leg and had to crawl up my stairs and lean on wall to slide down then I would be fine after a few days I find it unbelievable to be in such pain and then for things to be fine.But as time went on this was causing me to have lots of days off work with the ups and down and my employer was not happy so I finished and started looking for other work as my job involved heavy lifting and this tolled on me at night timesand mornings...I am 56 and keep applying for jobs but have not even been asked for interviews ..So only thing I can think of , it must be my age ,but I will keep on trying as I am not entitled to any benefits as my husband works full time and our funds are getting very low and he even has to pay for my dental treatment..

But getting back to the point as I am tending to go on a bit, I was haveing a lot of pain in my foot which is causing me to stay in more because I have to take my shoe off after an hour..So finally got an appointment to see if I could have an X-ray The on call doctor (who we tend to get now) examined my foot and I said I was wondering if it was down to my condition fibromyalgia, At that point he looked on my notes and told me he couldn’t see the name fibromyalgia and that it just said my condition was down as chronic pain.not fibromyalgia. So I am now thinking what is my diagnosis?

By the way he wouldn’t let me have a X-ray and told me to buy some in steps they will help,!,

30 Replies
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Hi

Personally I would go by the rheumatologist as they specialise. With regards to limited income it may well be worth claiming PIP (personal independence payments) to top up your money. It’s a benefit that can be claimed either if you work or don’t. The fact that you husband works full time will be disregarded.

If you are awarded PIP then there are a number of add on benefits, including blue badge and carers allowance dependant on which elements of PIP you get

Tom

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Thanks Tom I will look into this.

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Hi Truemando,

Your issues sounds so much similar, don't forget GPs are general practitioners, and not specialist like your rheumatologist who specialises in the field. You should have had a confirmation sent by the rheumatologist, copy should have been sent to your surgery and your self specifying your condition, highlighting that you suffer from Fibromyalgia, please chase up this, so that you are aware of your diagnoses, it's proof when going for appts. OHA, DWP, Pension etc. or early retirement on ill health ground. All the best. 😇

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Thanks for reply..wondering how to chase this up .should I phone hospital or? Need to see what’s on notes from her or ask doctor?

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Do ring the hospital, probably if you have the direct telephone number to the consultants secretary, they will help, but do highlight the situation, especially not receiving the letter of confirmation of your diagnoses. 😇 X

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Thankyou will try that tomorrow 😀

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How do you get on with the GP, are you able to book an appt. with a specific doctor that can advise or help or directly ring the hospital.

I had a helpline to discuss health issues directly, for my conditions.

Please do ask your GP or get a telephone conference appt. All the best, 😇

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Years ago I used to ask to see the doctor I liked but today they are all different ones ....It’s very awkward...

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Just persevere for a short while, I know that it's frustrating, make a list of all the issues you want to raise and discuss. I am forgetful, so made a medical list of my symptoms, also all the medications I take reminds me which I hand over, when asked about my visit, and how they can help! 😇

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Thanks for this post. I have been trying to tell others exactly the same regarding GPs being 'general' practitioners and how useful a specialists paperwork can be for the future. Yes, a GP is able to diagnose Fibromyalgia but it's much better for 'you' if it's diagnosed by a 'specialist' such as a rheumatologist. Good luck to the OP, hope you get this sorted.

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Thanks for reply..

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Even if your OH works if you have enough credits on your NI record you can get ESA (support group not job-seekers). PIP is fine but ESA is basic benefit and chances are you qualify. My OH worked (now retired) I still got ESA.

one never knows unless one tries right?

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Chronic pain is what most hospitals say even my occ health says this it’s means you have had pain for longer than 3 months it does not mean you don’t have fibromyalgia I would contact your specialist by phone and ask them to put the diagnosis in writing as they have not up dated your doctor with the excate details

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Thanks Jamie.

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Hi your foot pain could be down to Plantar Fasciitis...

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Truemando,

I have had doctors write incomplete and even incorrect information on my charts, then I have to chase down a previous doctor's office to clarify things. Like others have suggested, definitely contact the rheumatologist's office and get the chart amended, if possible, so that not only you know for certain what your diagnosis is, but all subsequent doctors. Where, exactly, on the foot is your pain? Can you see a foot doctor?

There's a ton of information on the Internet and in books about fibromyalgia, and I know it can be overwhelming. You may find that managing stress, avoiding carbs, sugar, and caffeine, plus getting plenty of sleep are vital and can help decrease inflammation and pain. I would also recommend liquid glucosamine chondroitin with MSM (the pills are almost worthless; very little is absorbed by the body).

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Thanks for this information Linnea.

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You're welcome. :-) Where on the foot is your pain?

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Comes in my right foot after wearing my shoe for about an hour..No matter wear I am or what I am doing I have to take my shoe off..Found this embarrsssing when I was working...Never bothers me in house with just socks on..Watever it is it’s not going away..Tryed flat shoe .wedge shoes all kinds...If I know I am out for more than an hour I have to take some flat open sandles with me😒

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Sorry in the all of my foot below my ..toes

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Ball...

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Have you filled in the tax form for married people? It’s not much but it does mean your husband may get part of your tax allowance. It’s about £230 a year more tax free.

Also I was under the impression you have to be invited for interview if you had a disability. It may only apply to my employers but it’s worth you looking into it.

Can you not claim esa sickness benefit? You need to hand in sick notes but it may be worth it.

Good luck with everything. Xx

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Yes did do that with marriage tax..But been done work 2 year now not had a dime off anyone..shouldn’t have finished myself really...but when you not fit enough to do heavy work...

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As someone else said you should be able to claim esa when I was off work for a long period I was told to claim and even though I have a partner was assessed as single person it’s worth going online to turn2us website and go on benefits calculator it will tell you what you are entitled to and how to claim it they also have a free phone if you need any help with it

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Thanks Jamie .will check this..

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Bless you you need to be refered back to rhummy for them to properly assess you hun and tell you whats wrong and make sure they write to your docs and say whats wrong too hun otherwise you ll not get tge help n support you need xxxxxx

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Ask at Your Pharmacist for Form HC1. If you are on a low income you can get free prescriptions, help with Optical care and dental care, as well as wigs and surgical stockings should you need 'em!

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Ring your GP surgery and ask reception, if they can find a copy of your referral to the rheumatologist and also ask if they received a letter, detailing your health results, if so ask for a copy.

The same health issue happened to myself, five yrs ago. I lost my first job, I was eventually sacked, due to too many sick days. Then three months later I had another health relapse, This time I resigned. I phoned ESA, explained my situation and they took all my details over the phone, they asked me many questions about my health etc and advised me to send them a sick note, which I did. I was too ill to leave home.

I was initially advised by my GP that I had fibromyalgia. I also had many other health issues too.

So far, Ive had three referrals, to see a rheumatologist, which I requested, so I could rule out rheumatoid arthritis. As sometimes it can take a couple of years to show in blood tests. This has been confirmed I don't have it.

However, my last visit in August 2018, I asked if it was definitely fibromyalgia and this rheumatologist stated that it was not fibromyalgia and diagnosed me with Chronic pain syndrome. She even wrote the words 'Diagnoses' on my report.

She stated that the doctors had me on the wrong type of pain medication, for year. She stated that people with chronic pain syndrome shouldn't really be taking opioids.

I am still struggling to get primary doctors, to give me the medication, ( I am now taking morphine for my pain). she suggested, in her report, that the doctors try me on either - Gabapentin or pregabalin ( I did try one of these, whilst using buprenorphine, but I became very ill, with severe and very painful oedema) .

Originally I was taking Buprenorphine patches, (gradually built up to 30mg), amitriptyline, for my foot pain. I am now taking nortriptyline - as it makes me less drowsy), codeine/co-codamol, (later, this was eventually diagnosed as bunions, on both feet, but it was the right foot, which was extremely painful. I couldn't walk properly and I was limping constantly, and I too, had to keep taking my shoes off, (even on the bus, after trying to walk, in agony, it felt like my feet were burning).

Keep nagging each doctor you see, to advise you, what is actually wrong with you, keep going to the doctors for regular check ups and keep asking for referrals to see specialists, as this is what I was advised to do, from wonderful people on here.

I wish you lots of love and lots and lots of free pain days. xxx

Amanda x

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Hi Truemando

Your description of the pain and it's irregularity sounds like fibromyalgia. I have fibromyalgia and the pain can be extreme or mild. If I overdo things or push myself too much physically I will get break out pain and I end up too sick to do anything.

I have found that Q10 supplement and vitamin D have helped.

Hope things improve for you.

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Yes I think your right with words extreme or mild...Sounds like my doctors just got down Chronic pain.last week wha. I visited.......But the rheumatologist gave me the leaflet on fibromyalgia to look on...And told me it was that....And that was 2012.....

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