Fibromyalgia

[Lady70a]

I was wondering if anyone can help me with some information about Fibromyalgia. I discussed the possibility of having Fibromyalgia to the neurologist who diagnosed my FND. He completely ignored me. My GP suspected Fibromyalgia a very long time ago, but she told me she cannot diagnose Fibromyalgia. Who would be an appropriate doctor to diagnose Fibromyalgia?

Many thanks

[Jofisher]

Www.fmaware.org is an excellent website and dr Devin starlynl website. Many of us have both if you live in the U.K. ask for a referral to guy’s hospital their fibromyalgia clinic within the rheumatology department but do specify you want the fibromyalgia clinic. I will come back with the other website link

[Lady70a in reply to Jofisher]

Hello and thank you for your reply.I will take a look at the website you added. I moved from England to Northern Ireland and it is the worst place to get help with anything to be honest.

I am sure I will find some useful info on the site you have sent.

I am waiting to see a rheumatologist, when checking the waiting list here in NI.

It is around 7 years

🙄

Thanks again

[Jofisher in reply to Lady70a]

Hi there used to be a really good fibromyalgia support group in Ireland check it out but I am talking about 15 years ago

[Lady70a in reply to Jofisher]

I will take a look,

Thank you.

[Ottaw]

Hi, I was diagnosed with Fibromyalgia 10 years ago , you need to see a rheumatologist. Fibromyalgia is diagnosed based on the pressure points, occasional fatigue, severity of the pain based on the weather and stress. Did you check your Vitamin D level? Take care and if you have any questions please let me know.

[Lady70a in reply to Ottaw]

Hi and thank you for your reply.

I had blood test taken last year, was told my white cell count was very high. GP said it was a possible infection and I was been referred to a rheumatologist. After checking the very long waiting list in NI. I was left really shocked. 7 years is a long time to wait.

I may end up having no choice but to go private.

I have been in agony from 2014 after suffering from carbon monoxide poisoning.

I was diagnosed with brain injury and multiple neurological from carbon monoxide.

Since this CO incident I have become so unwell.

I have to say that before been poisoned I was healthy.

I believe my chronic pain was triggered from carbon monoxide, because it just doesn't make sense to me. Carbon monoxide effects every organ in the body.

To go from healthy to the way I am now is very difficult.

May I ask you, how long does it take for a rheumatologist to diagnose fibromyalgia?

I assume blood test are involved. If I go private I am concerned about the costs.

Thanks again

Kind regards 🙂

[Ottaw in reply to Lady70a]

I'm so sorry you had to go through all these, a good rheumatologist should be able to diagnose you right away specially by ordering set of blood work, what's your Vitamin D level? Check your diagnosed concerning Fibromyalgia on Mayo clinic and Cleveland clinic the best website.

[Lady70a in reply to Ottaw]

HiI am not sure about my Vit D level.

I have had so much to deal with I cannot remember.

Hopefully will find out though.

Thanks for the info about Mayo clinic, I will take a look.

[Westie_1]

Hi Lady70aI was diagnosed with fibromyalgia in 2008 by a rheumatologist. Not by my Gp or Neuro. Then in 2011 Rheumatoid Arthritis and Graves Disease. 2019 FND by Neuro along with Migraines and restless legs. I honestly believe a lot of symptoms and conditions seem to go hand in hand. No wonder some of us also get FND. But no matter what if you have the fatigue, brain fog and sensitive to pain etc you probably do have it. You just need to take one step at a time. If anything becomes too much leave it. It’s always there tomorrow or when you feel better to complete it. I hope you have a good support around you as that helps as well. You take care and sending you a group hug from us all as we know what you are going through X

[Lady70a in reply to Westie_1]

Thanks for your reply.My goodness you have had a lot to deal with too.

It is difficult coping with the endless pain.

I sleep a lot, always exhausted, I guess I just need to find out if I have fibromyalgia or not.

The neurologist just completely ignored me when I asked if I could have fibromyalgia.

Then because I politely asked questions about my health, he said I would be better seeing someone else. He was rude and arrogant, so I am glad he doesn't want to see me again lol.

Some doctors it seems just don't like the patient asking questions about their own body.

Thanks for the advice

[Westie_1 in reply to Lady70a]

Sounds like my first Neuro waste of time… but don’t give up there are some good professionals out there . Just hope you get a decent one next time that actual listens to you! Good luck and make notes of what you want to ask and their response as the appointment is over to quick and we sometimes forget what we need to say ( I do) Don’t be fobbed off X

[Lady70a in reply to Westie_1]

Yes, the neurologist was a completely ignorant man. I did bring a list of questions with me because he left me looking at fnd websites for 8 months before seeing me again.

His face when I told him I had a few questions made me realize before I even spoke that he did not like it. I find it difficult to understand how he diagnosed me with fnd in less than an hour.

But I did leave smiling because I did not like his attitude and was pleased he did not want to see me again lol. I am not easily fobbed off, that is what he did not like

Thanks again

[210272]

Being ignored by doctors is so, so wrong. I don't know much about Fibromyalgia but I saw this today (via Technology Networks) and it might be of interest to you.

Fibromyalgia is a rheumatic disease of unknown origin, which is characterized by chronic pain and often accompanied by symptoms of depression. It mainly affects women, and there is no cure, but various treatments can help relieve the symptoms.

Cognitive-behavioural psychological therapy has proven to be a useful tool in this area. Now, a multicentre study involving researchers at the Universitat Oberta de Catalunya (UOC), the University of Barcelona (UB) and the Universidad de Las Américas (UDLA) in Ecuador, and published in open access format in the journal International Journal of Clinical and Health Psychology, has recently proven that another form of psychological therapy, called personal construct therapy, is just as effective in reducing depressive symptoms and improving patients' quality of life. According to Mari Aguilera, a researcher belonging to the GRECIL interuniversity group, as well as a professor in the Faculty of Psychology and Education Sciences at the UOC and the UB and the co-lead author of the study with the researcher at the Universidad de Las Américas in Ecuador Clara Paz, these results make it possible to "expand the range of effective therapies and increase the flexibility to adapt to each patient's particular characteristics and needs".

106 women in a pioneering multicentre study

The study, which was coordinated by the UB full professor of Psychology faculty and the Institute of Neurosciences Guillem Feixas, included 106 women with fibromyalgia and depressive symptoms who were treated in ten different places: two mental health centres and eight primary healthcare centres. The association between fibromyalgia and depression is common in these patients, and appears to work both ways: each one increases the risk and aggravates the characteristics of the other.

The volunteers followed a weekly course of psychological therapy for approximately four months. Half of them received standard cognitive-behavioural therapy, which has already been shown to be moderately effective in this type of patient. The other half followed a treatment based on personal construct therapy – a different approach "focused on people's identity, how they see themselves, how they see what happens to them and how they see others," explained Joan Carlos Medina, a member of the Faculty of Psychology and Education Sciences at the UOC, and a researcher at the UB.

The results of the study show that both the therapies reduced symptoms of depression in approximately 60% of the women taking part, and that there were no significant differences between the treatments. Furthermore, they also showed improvements in terms of the disease's impact on their daily functioning and in terms of pain. In specific terms, approximately one in four patients who received personal construct therapy significantly improved their functioning in the medium term, and one in six experienced reduced pain.

More tools for personalization

"Fibromyalgia has no specific known cause and there is no cure, but a psychological improvement has an impact on physical health," explained Aguilera. This is particularly important in a disease "which is still questioned by some doctors, and which is often considered less important due to the fact that it mainly affects women," she added.

The standard cognitive-behavioural therapy "is more interested in how to change behaviour than the reason behind it," said Aguilera, while personal construct therapy is focused in particular "on how you build your world and what you give meaning to. But it's not so much about setting them against each other, as seeing whether the two of them can be useful from a different perspective."

Some studies have shown that personal construct therapy could be useful in treating depression, for example, but apart from a small pilot study, "this is the first time that this type of therapy has been studied and shown to be helpful for fibromyalgia patients," explained Medina. Having more proven resources means that they can be adapted to the patients' preferences. "It helps us to personalize treatments, and adapt them better. We have more tools for listening, learning and proposing strategies," he concluded.

Reference: Aguilera M, Paz C, Salla M, et al. Cognitive-behavioral and personal construct therapies for depression in women with fibromyalgia: A randomized controlled trial. Int J Clin Health Psych. 2022;22(2):100296. doi: 10.1016/j.ijchp.2022.100296

[Lady70a in reply to 210272]

Hi

Thank you for your reply.

CBT was never helpful for me, having brain injury and multiple cognitive problems amongst the other health issues that I have, made it far more difficult for me.

I am a great believer in holistic therapy's, before suffering carbon monoxide poisoning I was a private holistic practitioner. CBT is useful for some depending on their problems.

It was not helpful for me.

Thanks for the info though

[210272 in reply to Lady70a]

That's a lot to be dealing with, I really feel for you. Personally I have never found CBT to be helpful, either, although I think the new therapy mentioned in the article could have potential and I liked the commentary about why Fibromyalgia has been neglected. I don't know if you have come across the work of Annie Oaklander on YouTube about Fibromyalgia but I found that very interesting and empowering, as did a close friend who has Fibromyalgia. It took her years to get diagnosed and she was dismissed and gaslighted by doctors along the way, which resulted in medically induced PTSD.