Unbelievable

[adrian_holland]

OMG After a totally pointless private consultation with a Neurologist with no conclusions, thanks to the persistence of my Physiotherapist I went today to a consultant rheumatologist that she had referred me to, I went with little hope other than that of checking boxes again. Within moments of the meeting beginning he told me that he believes that my many symptoms can only be one thing (FBS) Fibromyalgia, and that he could not see how this had not been spotted many moons ago.

Now I am off on a research mission (at his suggestion) as he has advised me to get the lowdown on how my symptoms fit in with this as in a couple of weeks I need to sit down with my GP and start to drawer up a care plan and to get the other specialistside in a line and organised.

I had not even heard of it and therefore not even considered it and so I see a long road ahead, so if anyone on here has any advice then it will be gratefully received

[carotopgal]

I also have fibromyalgia. My rheumy put me on Cymbalta and the difference was incredible! It worked really fast and the pain stopped within a week or so. And I've been able to keep it at a low dose of 20 mg so far. You might ask your GP about this drug to see if it will help.

[lupus-support1 Administrator in reply to carotopgal]

Cymbalta (duloxetine) is a selective serotonin and norepinephrine reuptake inhibitor antidepressant (SSNRI). Duloxetine affects chemicals in the brain that may become unbalanced and cause depression.

Cymbalta is used to treat major depressive disorder in adults. It is also used to treat general anxiety disorder in adults and children who are at least 7 years old.

Cymbalta is also used in adults to treat fibromyalgia (a chronic pain disorder), or chronic muscle or joint pain (such as low back pain and osteoarthritis pain).

Cymbalta is also used to treat pain caused by nerve damage in adults with diabetes (diabetic neuropathy).

I am very glad this is helping you.

You are also welcome to join the LuPUS Message Board. Let me know if you would like some information.

Be well!

Ros

[lupus-support1 Administrator]

This is quite shocking that FM was not spotted. It is not difficult to diagnose since it involves pain in all 4 quadrants of the body which you can see here:

lupus-support.org/LuPUSMB/i...

You can find a great deal of information here:

lupus-support.org/LuPUSMB/i...

You can also start a post in this section. It is included because a proportion of patients with SLE also have FM.

It is a manageable condition.

Be well!

Ros

[Atibrat Moderator LUPUS SUPPORT in reply to lupus-support1]

Ros

I always get an error trying to get onto the site. Could it be because I am in the United States?

[lupus-support1 Administrator in reply to Atibrat]

No - this should not make any difference. I want to help report this matter to HU.

The next time you try to get onto the site, would you write down EXACTLY the error message (if you can take a picture/snapshot that would be even better). Please state which browser you are using and whether a Windows PC or MAC etc I can then let HU know.

Be well!

Ros

[Atibrat Moderator LUPUS SUPPORT]

I was first diagnosed with fibromyalgia when they could not find a reason for my pain but later after a bad rash and my reaction to steroids given for the rash my doctors ran an auto immune panel. Then I was sent to a Rheumatologist who said it was definitely not fibromyalgia but connective tissue disease and inflammatory. I also had no trigger points but do not know if that is still a stand of diagnosis.

[lupus-support1 Administrator]

There are very specific diagnostic categories for FM. A proportion of lupus patients also have FM. While a lupus flare will respond to corticosteroids, FM will not.

There is a great deal of information on FM at the LuPUS MB. Just register and you will have access to all the private forums. I have left details via the message system here. Any problems, let me know.

Be well!

Ros

[Atibrat Moderator LUPUS SUPPORT in reply to lupus-support1]

Ros it was my great response to a steroid shot that had my doctor running inflammatory blood work. He could not find a reason for my muscle and joint pain. I got a rash on a cruise ship go figure and he treated it with a steroid shot. I returned 2 weeks later and told him I had felt wonderful. He said no pain or fatigue and I said no I feel better than I have in a couple years. He got a frown lol

It is too bad it took that for further testing but I know he did his best as a gp. He has been my gp for 25 years and he is wonderful. Luckily I do not have fibro on top of everything else. For my fatigue they put me in the hospital for a couple days to check my heart and I had a sleep study. He was very thorough. He just never thought of autoimmune for some reason. I have no family history.

[lupus-support1 Administrator]

This is exactly the problem identified by Dr Graham RV Hughes (formerly consultant rheumatologist at St Thomas' Hospital's Lupus Clinic, London) who is one of the leading specialists on SLE. He said that unless the doctor is actively looking for SLE, it will be missed. This is why he wrote a paper called, "Is it lupus? The St Thomas' Hospital 'Alternative Criteria'" which you can read here:

lupus-support.org/LuPUSMB/i...

In his paper, he gives 14 points which doctors should look for and consider in relation to lupus.

Be well!

Ros

[Fighting]

I guess there is a part of me that objects to me, (the patient, consumer) needing to pay for the service and still be the person in charge of the care plan and keeping other professionals in line. I understand that the UK is different than the US but we still pay (dearly ) for the medical services we receive. RESPONSIBILITY DOCS, RESPONSIBILITY.

[Atibrat Moderator LUPUS SUPPORT]

Hi Fighting,

I understand your feelings but I try to think of it a little different. Yes you can go to the doctor get the diagnosis and take your meds and leave it at that.

I do go to the doctors and get my medication but I think this is my body and my life and I am not going to put it 100 percent in the hands of anyone except God. I want to have some control over my own health. Example people with type 2 diabetes usually do much better if they follow doctors orders, take meds as prescribed but also learn all they can about self help and life style changes they can do to help their condition. Doctors only have a small amount of time to spend with you and I have learned so many things on my own to help manage my disease. Diet, exercise, rest and stress management are just a few.

I have at least 5 specialist and even though most request records from each other no one has the time or cares more about you than you. Let the doctors do their part and you are correct medical care is expensive but remember that is one small part of managing a chronic disease. Also some insurances will set you up with a nurse case manager to help you and that can be helpful. They can help organize doctor appointment and often be a liason between you and all your doctors. Just an idea I know this can get very overwhelming.

Hugs

Tammy