Newbie. Help me to understand symptoms?

[Vandal]

Hi Everyone,

After posting recently regarding my first Rheumatology appointment, I attended and found the specialist to be really helpful and understanding.

She gave me a good 50 minutes to talk and take my case history. She thinks that I fit the symptom profile for Fibromyalgia, but before giving me the full diagnosis she wanted to rule out other symptoms I had, that in her opinion do not fit the symptom profile.

I'm now waiting on another panel of bloods for auto immunity to come back and she has ordered another full body MRI to assess my nerve function.

The Symptoms I have that she suggests are not typical of Fibromyalgia are as follows

1) Persistant bi lateral jaw pain

2) Severe Coccyx pain (Had a lumbar MRI already for this and found no pathology.)

3) Severe pain in and around eyes with light sensitivity and a slight off balance feeling.

3) Burning skin sensations that can last for weeks on my face and arms and sometimes my feet.

4) Extremely heavy legs and arms . ( Usually during a bout of fatigue, my current episode has lasted 8 weeks. )

As far as I was aware, these are all typical symptoms with Fibromyalgia. Can I ask do any of you here experience any of the above symptoms on a regular basis and if so were they formally attributed to your Fibromyalgia? Or if not any other condition?

Thanks so much, I'm just a bit confused now and worried.

[Dizzytwo]

Hi there, no the tests are normal. The GP or specialist will check for things that may sound similar. Like RA for example. There not saying you have it. But they need to make sure and rule it out.

Fibro can kind of mimic a whole host of symptoms so they need to be checked. If all tests come back ok then a diagnoses of fibro can be given.

Sounds like you have a great specialist there. Doing a fantastic job xx

[Vandal in reply to Dizzytwo]

Hi Dizzy thanks for the response.

Yes she is a very competent specialist.

Do you have any of the above symptoms though? I'm keen to know if other fibro sufferers actually have them too

[Dizzytwo in reply to Vandal]

Yes I have almost all those symptoms. But not everyone with fibro will have all of the same symptoms. Some may have totally different set of symptoms from the above.

But after having fibro for 40 +years I wouldn't be surprised if I've not had my share of all the fibro symptoms at sometime or other lol

[Vandal in reply to Dizzytwo]

Thanks Dizzy,

I was positive that I had read somewhere on the net that these are fibro symptoms...though with my fatigue sometimes I can't be sure which planet I'm own lol.

That's why I was so confused when the Rheumie said they weren't part of fibro.

Good to know that other people with fibro experience them too (despite them being so horrible.) because it means I can rest somewhat and not spend another ten years researching what the hell is going on with me.

Seems to be a big disconnect though between what patients experience as fibro and what the medicals accept is fibro, which is worrying. So far nobody seems to know that much about it.

[Dizzytwo in reply to Vandal]

I think this is where we have to be careful and not except everything we feel is fibro related. That's why the doctor is making sure he/she as not missed anything.

All these symptoms can be felt by people who dont have fibro. Thats why its a very difficult and frustrating illness. Both for the sufferer and the doctor unfortunately.

[Vandal in reply to Dizzytwo]

I'm sure that Fibro sufferers often get overlooked re other serious symptoms as everything is probably just attributed to fibro. It's a bit like when a person has anxiety and everything is just assumed to be a result of that. It can and has been very frustrating and traumatising actually going through years of gatekeeping G.P's. I don't have much empathy for the doctors I'm afraid. I have only ever seen one decent G.P in seven years who had any kind of genuine interest in getting to the bottom of my suffering, all it did was create more prolonged pain which was unnecessary. Even the Rheumie was completely baffled by the convoluted diagnostic process the G.P's had sent me on. Anyway. Onwards and Upwards. I'm relieved in a way that I won't have to deal with G.P's anymore.

[Dizzytwo in reply to Vandal]

Hi again, sorry I dont understand. May I ask why you wont have to deal with doctors anymore? Maybe I'm just having a thicker than normal day 😂

[MaggieSylvie in reply to Vandal]

I'm surprised the consultant mentioned fibromyalgia when normally, they check for more obvious conditions with blood tests and so on, and when they're all ruled out, then talk about FM. But as Dizzytwo says, there are many symptoms and we're all different. It doesn't bother me too much these days because old age has brought me other nasties that ha ve overridden FM painwise. I know it's just frustrating not knowing what label to put on what you have. Hope you get answers soon.😊

[Hidden in reply to MaggieSylvie]

Sorry to hear that Maggie...

I just had my bloods back and all normal bar one. Although it is only slightly up so I don't meet the threshold for auto immunity apparently.

Just got to go for ( another) MRI and then it will be a definite diagnosis of Fibro.

Though I'm not sure who she will refer me to next for the other symptoms that don't fit the profile for fibro.

At least I know now some of what I've been dealing with which is a relief. It's been a long old slog.

[Vandal]

I've had the diagnosis and I don't tolerate the meds well so I'll be cracking on as I have been with good nutrition, res,t a tens machine and neuro plastic pain education and brain re training. The G.P's are next to useless to me so unless I have a significant health crisis no further need for them.

[MaggieSylvie in reply to Vandal]

I am only glad that I had a good GP who diagnosed me with FM. Those were the days when they had time to listen to patients and be kind to them.

[Hidden in reply to MaggieSylvie]

Yes quite!

[Cat00]

Wow full body MRI, I've never even been given one in 30 years!

[Hidden in reply to Cat00]

I think she's being cautious, I have a family history of rare brain lesions, but on the male side. Quite sure that's not what I have though!

[Cat00 in reply to Hidden]

I should have loads as I've had chronic migraines since childhood, apparently severe migraines can leave lesions. Maybe they're worried you have Osteomyelitis or something like?

[Yassytina FMA UK Volunteer]

The Rheumatologist sounds very thorough with you and hopefully when these tests are done you will get some answers , glad you are being well looked after xx

[Hidden in reply to Yassytina]

Thanks Yassy,

Yes she was lovely, breath of fresh air after the G.P's x