no need to see a rheumatologist

[PAULINE15]

my son’s been waiting for rheumatology appointment. When we made enquiries a different GP told us there is no need for a rheumatologist to confirm fibromyalgia as doctors are more up-to-date and are able to make a diagnosis themselves .

[Blue-52]

hi, my doctor 1st diagnosed me, she is very up to date with fm, but just to confirm, she sent me to a rheumatologist and she was right. As long as the doctors know enough about fm, then this is ok to be diagnosed by them. I am sorry to hear your son has this dreadful condition.

[PAULINE15]

they have done blood tests and examined him to check for arthritis damage and as I’ve got it we are happy to accept that, he should have had test years again but he wouldn’t go back and for, he’d have a negative blood test result and just struggle along x

[KBM0g3r in reply to PAULINE15]

A negative blood test for rheumatoid arthritis (RA), isn't conclusive unfortunately. In my family, despite having quite obvious RA and it running in the family, we don't test positive for RA in a blood test. This is common for about 20% of cases. We eventually get diagnosed for RA by having the deformity caused by it and other symptoms.

[Purplelife123 in reply to KBM0g3r]

this is the same for me I tested positive for RA 10 years ago and my ra advanced and worsened and eventually my gp did more test last year and decided I had fibromyalgia. My ra test came back negative this time, but gp had referred me back to rheumatologist to see if they can help.

[Nannyfibro in reply to Purplelife123]

I agree with you, I was being treated for R/Arthritis in 2005 by Nuffield in Plymouth and Sjorgren’s in 2008 and now I’m being told that I don’t have it, blood tests have come back as not having it. But my body is displaying the symptoms swollen joints fingers,, burning and red/hot. And now you can see fingers are twisted. Some doctors don’t know what they are talking about and dealing with.

[Purplelife123 in reply to Nannyfibro]

it’s mad really. My problem is I had to give up work early as I just couldn’t pull my weight and I made a pip claim for RA whitch was successful now I’m up for review and they are saying I don’t have it. I am terrified they think I have made a false claim.

[1whitestar in reply to Purplelife123]

This has happened to me fibromyalgia and rumertied arthritis. I am now on medication I have bean off work now 7 months my pip is now going through a tribunal. Are the two liked together I wonder. Thank you for sharing .

[Nannyfibro in reply to 1whitestar]

I have been identically in the same situation as you. I had my review last week and I got a text from them saying that the report was in the same day. Just waiting now with being so anxious and stressed about everything it doesn’t help our condition. I also wanted to ask. If anyone else went through this with PIP I was asked if I was depressed and I was severely manic depressed. She asked me about suicidal thoughts. I answered very honestly as to how I felt at the time. She then said should she call my GP. At that I said no. There’s no need to notify them. Later that night . I got a call from my surgery asking if I was okay. Are PIP allowed to do this. When you told them not to say anything to the doctor. Thanks for reading.

[Luckychica in reply to Nannyfibro]

In answer to your query re confidentiality from PIP to your GP, then yes, I believe that the ‘Duty of Care’ in the case of suicidal thoughts would overrule the fact you said there was no need to contact the GP.

It is confidential information that was passed to a professional doctor who in turn has a ‘duty of care’ to you and the GP is also bound to patient confidentiality.

This is to protect you, otherwise if a person should take their own life but had told the DWP (or another entity) of your suicidal thoughts or intentions and that fact was logged but not passed on to another professional who is treating you, the organisation ( DWP or other) would be in dereliction of their duty towards you.

This is as I understand it.

I hope you feel better soon, those thoughts can bring your spirits down. Wishing you all the best.

[Nannyfibro in reply to Luckychica]

thank you for replying and help me understand the process. Sending big hugs x

[KBM0g3r in reply to 1whitestar]

Well it's possible to have what is termed "secondary Fibromyalgia". The severe stress and pain of coping with the one condition can cause the Fibromyalgia. They now know that Fibromyalgia is caused by prolonged exposure to cortisol. Both conditions are also linked to the immune system.

[KBM0g3r in reply to Nannyfibro]

My aunt had her fingers at 45 degrees on both hands but still tested negative! Fortunately her GP knew the family history and she was so obviously disabled and deformed by it. Nearly all her uncles had it too and most were disabled by it. As you say, some doctors don't know what they are talking about.

I believe I have Sjorgens as well by the way - again it runs in the family. Doctors are reluctant to give a diagnosis for some strange reason. This is despite the hospital noticing my very dry eyes, when checking for something else and prescribing drops for them. I have a dry mouth too and frequently struggle to chew food and also get mouth ulcers. One doctor even said; "What's the point of diagnosing it as we can't cure it?"

I don't expect a cure but I would like some help with alleviating the symptoms!

[PAULINE15 in reply to Purplelife123]

the GP said that as they have examined him and found no damage to joins which he should due to the length of time he’s had such pain they were happy to say it’s FM

[Meditationlover]

I was diagnosed by rheumatologist, but that is correct, GPS ate more knowledgeable on fibomyralgia then ever before

[Welshcatlady]

I was diagnosed by my GP. She did the usual blood tests which all came back normal. She also referred me to the pain clinic but that was a waste of time - just told me keep taking the medication. Sorry to hear that your son has this awful condition.

[Yassytina FMA UK Volunteer]

Sorry to read your son has Fibro, my doctor did diagnose me ,some will refer to be sure to a rheumatologist. Are you still on the list too see the specialist xx

[PAULINE15 in reply to Yassytina]

no he’s not as far as we know the one GP said he had requested a rheumatology appointment and said it should be soon then when we hadn’t heard I phoned the booking office and they said there was no record of a referral so I contacted the surgery and that’s when a different GP said they don’t refer to the hospital now.

[PAULINE15]

thank you all things are tough for him he’s been homeless for 10 months, has mental health and been signed off work, that explains the extent of his pain

[EarthSitter1]

If you are lucky enough to have a good Gp then yes they are right some GPS are very up to date and on top of things. Sadly my Gp is rude, bombastic and doesn’t listen 😕so last time I saw him I insisted on a rheumatologist appointment I must admit that has worked out better for me as he’s helped with medication, steroid injections and physio which I would never have had if I had just dealt with my Gp.

[Flowerc]

yes my doctor told me the same he diagnosed me also

[2hot]

I have osteo, 'probable' RA or Bechets and haven't seem a rheumatologist for over 20 years. They told me there was nothing they can do for me!! Luckily I have a good GP.

[Tiggerlostherbounce]

hi from my experience helping my sister with various claims for pip etc, it would probably help if you had a specialist diagnosis on file, , sometimes they may also refer you to a specific programme that may help. If you have a referral, even if you have to wait a while, I would still attend if possible. I know it’s not right but benefit and official departments when assessing pretty much always ask if the diagnosis has been confirmed by a specialist.

It’s sometimes a long journey, it has taken me about seven years , maybe even ten to get my diagnosis sorted and confirmed. Hopefully I can apply for pip soon with the help of the pain management team following a referral from the specialist at Liverpool Walton , they specifically look at fibromyalgia, cfs/ me illness

Hope all goes well for your son, I would also recommend asking the gp for a referral for cbt as this will help with any stress, anxiety and depression.

All the best 👍🤞

[PAULINE15]

we both get PIP

[Swan_Dive]

Hi I was diagnosed by a ‘specialist’ and referred back to my GP. That was 15 years ago. When I asked my GP to refer me to a rheumatologist on the advice of occupational health he refused. This had a negative impact on my claim for ill health retirement. Hope all works out for you. X

[Sleepyhead_]

Hey there Good to know as 3 docs have said it for me but still waiting for rheumatology take care 🦋