Do you worry that pain that could hav... - Fibromyalgia Acti...

Fibromyalgia Action UK
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Do you worry that pain that could have physical cause is ignored due to the fibro diagnosis?

lyndsaylulu
lyndsaylulu
β€’17 Replies

I have been struggling with neck pain today with full on ear, head, jaw, and shoulder pains along side really loud tinnitus. I am concerned that it is due to my arthritic neck issues and bulging discs but also worried that if I seek advise they will say it is just the fibro without really looking into it. I have pains in my hands and arms and also my feet and legs which is also probably structural as I have had several lower back surgeries. Not really sure what my question is and not really sure I am even asking or just calling out as the pain is crappie! !! Sorry for wittering.

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Hi I am sorry you think they will consider everything is Fibro. Ask for an X Ray or scan to have this checked out. If your GP is reasonable you may get heard 1st time around . I have neck issues going back years. Physio can help ease the pain for sure. Check NHS for neck pain and that could assist ?

Best wishes

Since I was diagnosed I had fibro, my GP stopped seeing me as a number and looked at me as a person. He knows me and I have a much better relationship since.

Yes you need to bring this up to your doctor πŸ‘©πŸΌβ€βš•οΈwhat you are going through is not fibro. I just had this weird pain hit my right wrist and hand. It is more of a transit type pain. If it becomes consistent and more severe I will bring it up to my doctor. What you are describing is not stemming from fibro and it needs to be addressed. πŸ€”πŸ’•πŸ¦‹πŸ˜ŠπŸŒΈπŸŒΏ

Mydexter
Mydexter
in reply to Cherylvit

If you've had scans and X Ray's on your neck it seems your Dr is taking notice, and not regarding everything as fybro , though it could well be fybro, I had the same and after a scan found it's osteoarthritis (wear and tear,). So hopefully he/she are qualified and know what they are talking about, take care

Cherylvit
Cherylvit
in reply to Mydexter

I hope they get it all figured out for you and get to the bottom of the problem. πŸ˜ŠπŸ’•πŸ¦‹

To be fair I have had mri scans of my neck and the 11th on my lumbar spine! I started off with the spinal issue and I have a great doctor who listens and also she has a neurologist for a husband!! I suppose I am scared that anything in the future could just be put down as another fibro symptom. My mum lived a life with severe, chronic abdominal issues and when she developed more symptoms it was ignored, she died of cancer that had been dismissed over and again. I am not a fan of multi symptom conditions as I can't tell which is which !!!!

Al10
Al10
in reply to lyndsaylulu

I think you have to get each new symptom checked. I mean the ones that aren't just transitory of course. I hate it because you end up prodded and poked by each different dept. But at least you get peace of mind after. Fibros statistically, tend to die more than others from cancer. I think that is because they dont get checked in a timely fashion and leave it too late. (not because Fibros are prone more than others to cancer, because I don't believe they are.) People are much more informed of symptoms but still fibros dont like to make a fuss as they tend to think everything will be put down to fibro and they have to put up with it. Too many times Fibros get labeled as a fuss pot or it's all in the head. It's not true but it affects how we access help.

Regarding your neck maybe ask if you can have a longer appt to discuss your worries again. Is there anything more your GP can suggest? If there is something they can do to help, then you need to discuss this. Suffering in silence wont get you any answers. However we do need to be prepared for the fact that, sometimes, even when everything is checked, there still maybe nothing more they can do. Neck pain can be very debilitating, so it is important you have done all you can to be as well as possible. I hope you can get answers and help.

@lyndsaylulu, that was neglect of the doctor on your mother’s care. Did you take legal actions against that doctor? Did your mother get a second opinion? I’m not sure how things work in the UK legal system but here in the US a lawyer would look over all the facts and the data to see what kind of legal action can be taken. I happy to hear you have a good doctor who listens. Plus if you need a neurologist you don’t have to go far to find one. πŸ€—πŸ’•πŸ¦‹πŸŒΈπŸŒΏ

Thank you for your reply, it is always a comfort to know someone is listening. Xxx

M0AL61
M0AL61Administrator

Speak to your GP lyndsaylulu. You can always say to them that this is different from your usual fibro pain, and you're fairly certain that it's something different. Any good GP will listen xx

I have been really lucky with my new doctor ( old one didn't even know how to spell fibromyalgia let alone treat it ) and when blood tests, x-rays etc have come back negative I have never felt like I was wasting her time.

It's important to get things checked out and not put every pain down to fibro.

My stomach pains ignored by old doctor turned out to be several large bowel polyps that could have become cancer if not removed.

Most doctors will listen and understand that we have a problem knowing which pains are fibro and which might be something else.

And don't apologize for "wittering". I couldn't get through a day without a witter, a rant and sometimes quite a few swear words thrown in for good measure !! xx

Hazel_Angelstar
Hazel_AngelstarAdministrator

If I develop a new pain, or an ongoing one worsens... I always mention to my gp and say that while i appreciate it may turn out to be related.... I would prefer to check if it could be something else.

I was experiencing a lot of neck problems, with tingling and numbness in my arms..... It eventually turned out that the actual problem was due to pressure from me using 2 walking sticks... And not an actual health issue. But it could just as easily been arthritis or similar in neck. Xxx

Hi

I have 3 bulging discs C45&6. Cervical Spondilosis. Causing a gritty degeneration. I have had broken tendons in my ankle and broken ligamentsin both knees, causing tensions affecting my gate. I have variouse goint pains. Diagnosed with fibromyalgia 8 years ago. But knew there was more going on. I felt the fibromyalgia diagnosis was masking any other diagnoses due to disbelieving lazey Doctor's. It was as thought they had a meeting in my surgery to dismiss or disbelieve my simptoms. Under pressure at work due to absences i was sent to see an occupational Doctor. Over 3 years I saw as many Occ Drs. Luckily the 3rd took me seriously. I explained the above. He said he was employed by my employer, but he felp I needed his personal advise. So after my consultation he gave me 10 minutes more and the advice he gave me I give to you.

Go from here to your own doctor and take a water test with you. Ask for full screen blood tests accross the board. Any future conserns put in writing to your Doctor. Hand deliver it to your Sergey and ask reception for a double appointment to discuss the contents of your letter giving time for the Doctor to read it.

I took his advice and 2 huge diagnoses resulted.

My water sample showef glucose off the dipstick scale. The following blood tests showed confirmation of advanced diabetes and iron overload. Further tests confirmed a genetic disease called Haemochromatosis. Normal iron coubt is between 20 - 50. Mine was 1,350. I had to give a unit of blood every 2 weeks for 5 months to reduce the iron to normal. I had treatment for diabetes and worse still over the previouse 6 months my dog cept attacking me because my smell had changed. She badly bit my foot and face and I needed plastic surgery to repair it.

That was 5 to 4 years ago. It resulted in me loosing my job and when i threatened them with unfair dismissal, they settled with me. I had to have my dog put down.

From the lowest point in my life. I decided to emotionally fight back. With a positive attitude I have improved my weight fittness and attitude. I still have all the above problem, but I manage my simptoms (mostly).

The reason I tell you all this is to say:-

If you dont have confidence in your sergery. Change it. I did and have a lovely lady Dr now. I learnt a letter cant be ignored in the same way your words can. Doctors will act if you put your requests in writing. I lost confidence in the fibromyalgia diagnosis and asked for a second specialists opinion. Which confirmed that i had that too, but maybe caused by all my otber symptoms and stress.

Today is the second day of a nail technician's cause. Im training to go back to work part time to start with. Taking life one step at a time.

Sorry to be so lengthy. I just want to say in your darkest moment things can get better, but slowly and with a positive attitude.

Lindsaylulu. You can do it. I did and hope i will continue to. Feel free to contact me. 😊

You're not wittering--- and do take notice of additional / odd/ unusual pains.

Do NOT do as I did!

Tripped and hurt my ankle, thought it was sprained. Managed to get home ( took forever) and did RICE for days. It hurt, but then the rest of me hurts.

Eventually went to hospital, walking with stick, nurse looked at it and said hmmm looks like a bad sprain, you could wait for an X-ray but it's a 3 1/2.hour wait. Stupidly I mentioned fibro and she said, well you will feel pain then.....and I went home.

Another 3 weeks and I'm in agony, went to a different A&E---Xray almost immediately....and I'd been walking on a fractured fibular for almost 7 weeks.

In plaster, then a boot....

Please get your pain checked.

I don't know if it's a coincidence but I feel I get a fairer assessment when I see the locum Dr who doesn't know I have fibro. The minute fibro is mentioned they seem to presume the symptom is related to that. A Physio recently told me "of course your in pain with your ankles but it's just the fibromyalgia magnifying minor pain" he gave this opinion without even examining my feet and ankles. Seriously I feel as though my tendons are ripped. I went back to Dr and insisted he look at my feet, he said he queries Rheumatoid arthritis and has sent me for blood tests. We shouldn't have to fight for a fair assessment and treatment, it makes me so angry. I worry constantly that serious health problems could be missed due to medical negligence. I was told in April they were requesting an MRI scan of my spine, I'm still waiting. I bet if I didn't have fibro diagnosis I'd of had that scan by now...

Hi, for 2 years I've had constant pain in my neck,shoulder, down my arm, pins and needles and numbness. Every time I mentioned it to the doctor I was just told it's all part of the fibro. I have since moved to a different county and my new doctor not only put me on new treatment denied at my previous surgery but also sent me for an MRI scan. It turns out that I have 2 discs out in my neck! So yes definitely get things checked out.

All the best x

Hi - I've had similar issues and I would stress that it's *really* important to speak to your doctor about any new issues and "nag" them if you need to. I've had so many instances of other issues being overlooked because of my fibro diagnosis. The latest is that they've now discovered I have some kind of inflammatory arthritis - something which runs in my family and which I've been trying to tell them about for years. I'm hoping that once they've decided what type of inflammatory arthritis it is, and once they give me some treatment for it, I'll be able to get them to take the fibro diagnosis off my records. I regularly have doctors say "it's just your fibro" when it's something else (eg. calcific tendonitis in my shoulder was written off as "just my fibro" initially, as was neck arthritis). Please nag your doctor - and if they won't listen, change to one who will. Good luck!

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