Confused

[HayleyO]

Sorry for the long post. I have various symptoms such as random pains all over my body, a burning, stinging pain up both legs and on my body, with no rash it feels like I have been rolling in stinging nettles, weakness in my arms, pains in my joints, headaches especially the centre of my face, neck pain, pain in my arms with a weak grip, so I had to give up work, a weird stiffening of my legs that means I shuffle along, pains in my joints, under my ribs, unexplained tiredness, sleep problems where I feel anxious for no reason. These symptoms are totally random and last for short periods of time, but then appear again. 4 years ago I was told I had psoriatic arthritis and psoriasis only to be told 6 months ago I had neither. My symptoms had been put down to psoriatic arthritis. I had tests for my rib pain which was on both sides, plus reflux and bloating and under by ribs, but was told this was caused by a slight bone spur and offered amitriptyline which I resisted. At the moment it's fine again. Yesterday, I saw my Rheumatologist and I mentioned Fibromyalgia as my cousin has been told she has it, she pressed all over my body and asked it it hurt, I said that it didn't. She said my symptoms do not fit with Fibromyalgia. She told me I was hypermobile and asked if I was clumsy as a child, she looked disappointed when I said I was not. She tells me this is the reason for my pain, plus I have misfiring nerves causing the stinging, burning sensation, she has prescribed me amitriptyline too . I have just read that this is a Fibromyalgia symptom if it is not constant. My Rheumatologist and I agreed I don't need to see her any more as I don't have arthritis, she says there's no name for my condition and as far as treatment I will no longer see anyone. I would just be grateful for others perspective, does this sound okay or should I ask for another opinion.

 

[sunkacola]

Hi HaleyO,

Your rheumatologist is woefully behind the times when it comes to diagnosing fibromyalgia. That so-called pressure point test was debunked years ago as being worthless for diagnosing fibro. So I would discount what they say.

Which doesn't mean you have fibro, but that "test" he gave you certainly doesn't prove you do not.

Usually fibromyalgia is defined as widespread pain and other symptoms that are conclusively proven not to be all of the other diagnosable things that could cause those symptoms. The list is long: arthritis, lupus, lyme disease, MS, ALS, ....it goes on. Until you have been tested and all of those tests have come back negative, a diagnosis of fibromyalgia is premature. I suggest you do some investigation and find a doctor who treats fibro patients in your area and go to them and request the tests to find out. This is very important because you may have something that is far more treatable than fibromyalgia. Don't allow one bad experience to cause you to refuse to go to a different doctor and have the appropriate tests, as that will only be self-defeating. Definitely seek other opinions.

In the meantime, you are welcome here. We are a helpful group.

 

[HayleyO]

Thank you sunkacola, I will try to follow your advice. I admit I had very little faith in the Consultant I saw, I took in a list of symptoms which she never read which didn't feel me with confidence.

 

[sunkacola]

Yes, that would certainly be a first red flag. Any doctor or health professional of any kind who doesn't want to really listen to you should be avoided. While they do have limited time, and it's important to be aware of that and be brief and concise, a list of symptoms is precisely that: brief and concise, and should be read and acknowledged.

 

[JayCS]

a list of symptoms is precisely that: brief and concise, and should be read and acknowledged.

Hehe, red flag indeed to be wary, but not necessarily give up on someone just for that reason, in the context of all her behaviour it doesn't sound very confidence-inspiring at all...

However my list of symptoms couldn't be brief and concise and hardly ever have they been read, so that's only one part of it.

My experiences and ideas for trying to get the message across to docs....:

Symptom groups at most - but those would be so imprecise as to not be helpful. (Diagnoses alone I once counted 30, and that's increasing all the time.) Over the years I've worked on how to summarize and prioritize, esp. now with the fibro and MCAS symptoms - my first jab started or changed 25 of my symptoms.
Of my >50 docs in 25 specialities, there have been quite a few who had a standard questionnaire to fill in, 2 to 4 pages. When I got them I fill them in as asked. But the only ones who ever read any of this, used it even in part to ask questions or even used it in their reports, if I ever got one, was a centre for rare diseases.
After having given me a 16 page questionnaire, they read absolutely everything, but also asked many intelligent further precise questions. First and last time in my life I felt really understood and someone is taking as much time as is necessary to delve into all my issues (apart from all my various psychologists for my mental issues that is).
Oh and the pain docs went into depth first too, altho the resulting treatment was very disappointing.

So being that way where I am, and with no alternative, what I have to learn is to focus on my 2 or 3 priorities, try to probe further if someone isn't getting the point, learn from how they react to ask and talk better next time.

And I'm not saying my doctors were bad, I wouldn't say any of them were at all, I learnt a tiny bit from almost every one, even tho they were usually out of their depth or were so much in their own depth that they projected that on to mine...

When I recommend to do the ACR 2016 criteria checklist and take it to the docs, that's not what I could have expected from my docs, but definitely the checklist might have helped me to say to a doc who I want to check me for fibro: I have pain in all parts of my body, but the exhaustibility is even worse, insomnia, GI problems, not so much fog or headaches, no depression. Problem there is if they have to check for all the other things like they did, like ALS, MS, Sjögren's etc., then they should actually listen to or read all my 100s of symptoms... So that's I spose how it came to the 50 docs.

Any doctor or health professional of any kind who doesn't want to really listen to you should be avoided.

Of course I agree, generally. But it often happens to me that they listen to me properly every other time, and I have to take what I get and learn to get knowledge from them. Most of what I learn however is from preparing to talk to them and the talking process / interaction itself, like they give me ideas what to look for, sometimes by being a negative example...

How rotten my life would be with my body and these docs if I weren't lucky enough to be someone who can find things out about himself alone or from these ideas. I'd be totally incapacitated.

 

[Debshoe208]

The Mayo Clinic has a well-respected Fibro program in Minnesota and Florida. You might check their website for more information. I ordered a book put out by Mayo and learned more in the first four chapters than I have learned from doctors in 17 years. The pressure points your doctor used and said indicated that you did not have Fibro is the test used to diagnose Fibro in the past. There are many more symptoms now but it is difficult to diagnose. However, if none of those spots were painful when pressure was applied, Fibro may not be your problem. But I have found over the years (I’m 72) and struggling with many different ailments, that you can never know too much about medical treatment and your health.