Newly diagnosed

[geminigirl]

Hi everyone'.
New on here.thought i'd join this site and talk to others and share my story about being diagnosed with fybro myalgia and listen to others about there symptoms and there stories.
The last 4 years have been really tough, ive gone from having a good nursing job in the nhs to not being able to work.i was diagnosed with MS in 2020 relapse remission,and things just went down hill from there. The last 8mths after numerous visits to gp with chronic pain in my hips ,lower back,all the bones in my legs and feet,lwhere the pain was so bad cant even lay on on side cause it causes excruciating pain in my hips which go down my legs and throb,the pain is worse than toothache at times.and the fatigue is awful and takes me ages to get up in the mornings and even stand i finally got sone answers after seeing a new gp at my surgery,he listened to me.had a blood test for fybro myalgia and did a questionnaire about fybro myalgia and scored high.this was two days ago.just waiting to go back to see the gp and see how we are going manage this disesase.

 

[JayCS]

Hi geminigirl, not good you've got it, but good you've found a GP that's quick on the draw, and that you're reaching out. Might have done me good too, instead it took me 8 months to reach out after the diagnosis.
Be sure to work thru sunkacola's advice post here, if you haven't seen it yet! Good starting place for everyone.

 

[sunkacola]

Hi @geminigirl , and welcome to the forum.

I have to tell you that there currently does not exist a blood test that will accurately diagnose fibromyalgia, because there is no consistent marker that will show up in a blood test. So that, plus a questionnaire, does not tell you conclusively that you have fibro; it is not a basis for a diagnosis. There is, in fact, no physical or psychological test that is accurate for diagnosing fibromyalgia.

Since the doctor who did this is misinformed about this, I would question their ability and accuracy in treating fibro as well, although if you like this doctor and feel you can talk with them, you are ahead with that doctor over one who doesn't even believe you.

All of the things that you have listed as your symptoms are also symptoms of MS. Since there is a test that can accurately diagnosis MS, (and I am assuming you had that....MRI, or much less commonly a spinal tap -- if not, that should be your first step in order to find out if you really have MS), I am wondering why you and your doctor are looking for a diagnosis different and separate to the diagnosis of MS.

Now, I am not saying you don't have fibromyalgia....how could I know, and I won't assume that. Only saying that you may not have fibro, since MS can and often does cause all of those symptoms you report and the tests you have had so far are not accurate to diagnose fibromyalgia.

Fibromyalgia is a diagnosis that is only made by excluding all of the other things, such as MS, Lupus, Lyme disease, arthritis, ALS, and several others, that you could have that cause the same or very similar symptoms. Without eliminating all of those first it is not possible to be sure of a diagnosis of fibromyalgia. The very definition of fibromyalgia is unexplained widespread pain, fatigue, mental fog etc. The "unexplained" part is key, and means the patient has tested negative for all of those other things.

So, my thought is that unless you have been tested again for MS, and that test came back negative, meaning the previous test was in error (which can happen), you are not all that likely to have fibro, and the symptoms are coming from your MS. Another possibility is that you have developed another disease or syndrome alongside MS, and it is extremely important that you be tested for all of those possibilities before accepting any diagnosis. It's very important to get this information accurately.

Whatever you decide or discover, please know you are welcome here, and whatever we can do to help you we will do. No matter what is going on with your body, you may benefit from the information pose that Jay linked to, above.

 

[JayCS]

had a blood test for fybro myalgia

there currently does not exist a blood test that will accurately diagnose fibromyalgia

Whoops-a-daisy, I missed that bit!
Yep, the only blood tests involved in the diagnosis are to exclude other things...

 

[Catre]

Hi Geminigirl I'm a Gemini to. Welcome to forums. I had to see a nhs specialist for my fm my dr thought I had fm thats why he refered me to specialist. So maybe your next step is the specialist. They then do pressure point tests and more. But I don't know maybe it's different were you live. Welcome to forums.

 

[JayCS]

So maybe your next step is the specialist. They then do pressure point tests and more.

Good suggestion to think about specialists, in most areas that's what's necessary.
However main doc being a gp sounds like UK/NHS and they tend to cut everything.

A pressure or tender point test would usually prove a doc doesn't know his way around, as they have long been taken out in the US and the UK. In Germany docs are "allowed" to use any criteria they want, and my first rheumatologists did both use that test, my second prided herself in having a perfect grip for that test. In the fibro clinic however no one considered it at all.

 

[sunkacola]

So maybe your next step is the specialist. They then do pressure point tests and more.

Nope. The "pressure point test" was debunked as completely worthless as a diagnostic tool many years ago and any doctor who thinks it is still useful doesn't know enough about fibromyalgia to be of any use or help to someone who actually has fibro.

So far, the only way that fibromyalgia is properly diagnosed is by methodically eliminating all of the other syndromes and diseases that could be causing the symptoms the patient is having. Without doing all of those tests, the doctor is doing their patient a grave disservice, because the patient may have something going on that is then misdiagnosed, and therefore doesn't get the treatment that it requires.. Different things obviously require different approaches, and for some of these other diseases there is actually effective treatment. If a doctor just slaps the fibromyalgia label on someone, or does the stupid "pressure point test" and then declares the patient to have fibro, which has no reliable treatment and no cure that is currently known, it's laziness on the doctor's part and in my opinion comes close to malpractice.

Bottom line: if a doctor has "diagnosed" you with fibromyalgia based on a blood test or pressing on various parts of your body, or on a questionnaire, do not accept the diagnosis and get yourself to a doctor who understands what is required in order to reach the diagnosis.