Confused about Fibromyalgia - Fibromyalgia Acti...

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Confused about Fibromyalgia

Whoami76 profile image
17 Replies

Hey peeps,

(Sorry this is a long post, and I'm sorry if I go on a bit)

So, 12 weeks ago I discovered a lump in the side of my neck. Had it for 2 weeks. Felt hard and didn't hurt. Saw GP, told to go back for bloods if it's still there in another 2 weeks. Went back, had bloods, ESR (inflammation marker) double what it should be. Told I needed to have them taken again in another 4 weeks. Still got the lump. Feeling exhausted and everything is hard work. Bloods came back the same. Started to feel really poorly... swollen fingers, cramping feet and toes, absolutely exhausted and pain in my neck, shoulders, back and the front of my thighs. Spoke to GP. He thinks it could be fibromyalgia but that doesn't show as inflammation. Had bloods taken again last Thursday. ESR gone up even more. Apparently I'm being referred to a rheumatologist. I already have osteoarthritis in my spine but the pain I'm experiencing is different. Is it possible to have fibromyalgia and rheumatoid arthritis?

Thank you 😊

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Whoami76 profile image
Whoami76
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17 Replies
LisaSnow profile image
LisaSnowFMA UK Volunteer

Yes. In fact up to 60% of rheumatoid patients also have fibromyalgia.Was your lump tender upon touch? Were you given antibiotics?

Whoami76 profile image
Whoami76 in reply to LisaSnow

Thanks for your reply. My lump has never been tender or caused me any discomfort. I haven't been prescribed anything. When I questioned this, I was told I could take some ibuprofen!

LisaSnow profile image
LisaSnowFMA UK Volunteer in reply to Whoami76

Oh good if it was I would be concerned about an infection.

Arymretep profile image
Arymretep

Hi yes I’ve got RA which is in remission at the moment and, osteoarthritis and fibromyalgia, if your ESR keeps going up you should see a rheumatologist as soon as possible, it could be RA it could also be another inflammatory disease, why does your Dr think it’s fybro if your ESR is so high, did he say.

Whoami76 profile image
Whoami76 in reply to Arymretep

His words were "It's definitely something, you're not imaging it, I think it could be fibromyalgia but thatdoesnt show as inflammation so depending on your next blood results, you might be referred to a rheumatologist"

Cat00 profile image
Cat00

Don't want to scare you but my husband had the same thing and it turned out to Hodgkins lymphoma. Gp sent him away 4 times too.

Whoami76 profile image
Whoami76 in reply to Cat00

Oh bless him.! How is he?When I first found the lump, I thought it was HL... painless hard lump and exhausted. I expressed my concerns to my GP who asked of I was having night sweats, I said no and he just shrugged his shoulders. Surely I'd be sent for a scan if they thought it was lymphoma?

Cat00 profile image
Cat00 in reply to Whoami76

You would have thought wouldn't you! But no it's only when I went ballistic they sent him to hospital, the oncologist was annoyed bc he said there really weren't many things that caused lumps in the neck except lymphoma. He had no other symptoms and the lump didn't hurt. He's absolutely fine now, by the time he saw someone at hospital he was stage 4 but even then he was essentially cured within 2 months of chemo, they said it was very slow growing. The GP's were terrible though and get telling him to come back in a few weeks if it was still there, but every time he did they did nothing.

NatRose profile image
NatRose in reply to Whoami76

GPS are paid per patient on their books even if never see the patient. For every referral to hospital the GP is charged so this comes out of their funding. (Aka profits) so they don’t like referring. My GP actually said to me there are people worse off than me. I told him I am only concerned about me it’s your job to to be concerned about everyone else. Be polite but be insistent. My previous GP was fantastic, very caring and considerate. I moved out of area sadly.

Maud-ie profile image
Maud-ie

Very possible. I have Ankylosing Spondylitis and fibro

Whoami76 profile image
Whoami76 in reply to Maud-ie

Thank you 😊

Unfortunately yes. I would also ask for your lymph nodes to be double checked xx

MaggieSylvie profile image
MaggieSylvie

I have FM and OA. I have also had a hard lump in my neck for many years. I was told I could have it removed if it bothered me. It has never bothered me but is perplexing in the way it waxes and wanes. I have lumps in other places as well but I have had many cysts removed from breasts over the years so I guess this is normal for me.

SweepSooty profile image
SweepSooty

Hi Whoami76, you have described exactly what I'm going through at the moment, apart from my lumps are on my ankle and leg. I've had a swollen ankle for 6 months or so just getting worse and very painful but then I got swelling and lumps on my other leg, it took me serval attempts to actually speak to a GP and then finally got to see someone. Twice I was told I got a blood clot, which showed in a blood test but the scan was negative, then another blood test which also showed high inflammation. Trouble is one doctor thinks it's high the other doesn't, blood test was CRP at 10.So now got another appointment later this week to see the doctor who ordered the tests. RA has been questioned before as I have a family history of it but like you I'm just fed up of being messed about.

I do hope you get the right help.

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff

Lumps are not a fibromyalgia symptom, not is high esr rates

Nagavishu profile image
Nagavishu

I think yes once I read a article about it.

Yassytina profile image
YassytinaFMA UK Volunteer

Hello. Glad you are being seen by a rheumatologist some doctors will go down this route for a 2nd opinion, I hope you get some answers very soon. X

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