Thinking Positive??

[Turk]

Have had FM Symptom’s since childhood.
Fibro Fog, Neurology issues, Chronic Fatigue, Unexplained Profound Hearing Loss and more. Doctors absolutely no help.
Finally diagnosed with FM in 2007 and found a FM doctor at Baylor College of Medicine in Houston,Tx. in 2017. I believe my mother suffered from FM as well. When I was her caretaker I saw all the “misdiagnosed” symptoms and the doctors profiting from it to.
According to my doctor there is an international study going on for FM.
Fingers crossed.
I am 67year old male.

 

[JayCS]

According to my doctor there is an international study going on for FM.

Hi Turk, and welcome!

I'm not sure what you mean with "thinking positive??", but do think it good to make the best of what we have, keep a positive, happy outlook, enjoy as much small things as we can etc... Is that what you mean?

Also not sure what you mean by "an international study going on for FM", as 900+ studies per year are being done, and quite a few of them are international. Any idea what the aim is?

 

[Turk]

Hola JayCS,
To answer to your first question is, absolutely!
I guess I meant to express that those who deal with FM, are beyond positive thinking. Surpassing positive thinking into a daily consciousness of survival!
Mental as well as physical challenges to overcome each and every day. And this reply is still an inadequate description. I apologize. I’ll blame the meds.

As far as the FM studies, clinical trials and so forth, I asked the doc, is there anyone who are seriously trying to cure FM. It’s been around forever labeled a myalgia.
His reply was yes. I didn’t take it further.
And so it goes…

 

[JayCS]

Hmm, I confess I again haven't understood what you mean by beyond and surpassing. Again, let's blame the meds - if I took some, I would too! Let's see if I can be understood, cos I've nothing to blame except my complicated thoughts. My fog is OK today..
I think we do need to be careful what we mean with the term "positive thinking", to not use optimism to fog over & ignore instead of tackling difficulties. And for us radical acceptance is often better than hoping things will somehow get better....

OK, maybe you and others are interested what's been studied lately. I haven't had time to follow research this past year, cos of the jab-triggered MCAS and many other ideas, most fibro research isn't very relevant to me. But a quick run-down of what was published in a year is reviewed in summary by a Spanish team a year later, so for 2021 "Fibromyalgia: one year in review 2022" in the journal Clinical and Experimental Rheumatology 2022 provides these "take home messages", selecting maybe the most important results in 2021, which I'll first sum up:

1. Chronic pain is proven not just "longer-lasting pain" by measuring brain activation.
2. For diagnosis the revised Fibromyalgia Impact Questionnaire and the Fibromyalgia Features questionnaire appear helpful.
3. Helpful diagnostic biomarkers: high salivary cortisol; metabolites re. free radicals, lipids & amino acids; blood cytokines.
4. With FM there is more obesity, glucose intolerance and cardiovascular disease.
5. Chronic pain is proven not just "longer-lasting pain" by measuring brain activation.
6. It's now easier to measure Small Fibre Neuropathy without biopsy.
7. Stress and trauma are commonly associated with adult FM. (Note: adult)
8. IgG taken f.rom FM patients caused some FM symptoms in mice.
9. Genetic factors are being studied.
10. Ketamine didn't help FM as much as other pain conditions.
11. Low dose nal.trexone may help FM.
12. rTMS and tDCS (brain electrotherapy types) may reduce FM symptoms.

Diagnosis

• Salaffi et al. revealed a reliable way of measuring disease severity on the basis of the scores of the revised Fibromyalgia Impact Questionnaire (FIQR) (6).
• The Nociplastic-based Fibromyalgia Features (NFF) questionnaire may be a valuable primary screening tool (7).
• Studies underlined high salivary cortisol levels, alterations in metabolites involved in free radical, lipid and amino acid metabolism and in blood cytokine profiles (13-16).
• Neuro-inflammation has been high-lighted by OCT and [11C]-(R)- PK11195 PET (18, 19).
• Juvenile idiopathic arthritis patients who satisfy the criteria for JFM have a greater perception of disease activity than their physicians and are more disabled (22). [JFM = Juvenile Fibromyalgia]

Population characteristics

• FM patients have a higher prevalence of obesity and glucose intolerance, and have increased lifetime cardiovascular disease incidence (25-28).
• Neurophysiologically, the pattern of brain activation is not due to functional or structural alterations in the areas involved in acute pain, thus chronic pain is not just “longer-lasting pain” (36, 37).
• The Pain Detect Questionnaire (PDQ), the Douleur Neuropathique 4 questions (DN4), sural nerve cross-sectional area and corneal denervation can be used to non-invasively diagnose SFN (39, 40). [SFN = Small Fibre Neuropathy]

Aetiopathogenesis = Causes

• Studies confirmed significant associations between adult FM and exposure to stressors such as physical/sexual/emotional abuse, medical trauma; it could be related to glucocorticoid signalling alterations (42, 46).
• An animal study found that mice treated with IgG taken f.rom FM patients were more sensitive to noxious cold and mechanical stimulation, and that the nociceptive fibres in preparations of skin nerves f.rom the treated mice were more responsive to the same stimulation (51).
• Although the review by Janssen et al. identified a total of 30 FM-related genes (52), individual studies usually concentrate on fewer associations (52-54).

Treatment

• A clinical trial investigating the long-term (1-year) pain-modulating properties of ketamine found the smallest effect size in FM patients (60)
• Low-dose nal.trexone may be useful for FM patients, also in those who are “intoxicated” by inappropriate opioid treatments (61)
• Many studies investigating the role of rTMS and tDCS found that they may significantly reduce the impact of FM, although data are not always consistent (69-76).

Once again a strange software bug: This time it isn't allowing me to post the word "fro.m", so I've had to put a dot in it!

 

[Sabina]

Low dose Naltrexone has helped me immensely with EPV flares & Fibromyalgia. However it’s difficult to obtain an Rx unless you have a holistic/integrative doctor & a compounding pharmacy. Insurance will not cover it & it can be pricey. But many compounding pharmacies have providers that will help you with this.

 

[JayCS]

EPV flares

I think you mean EBV, Epstein-Barr?

L..D..N is difficult here in Germany at the moment, altho I've now got probably compliant cardio & pharmacies - the powder isn't available. But trying an alternative health practitioner's ideas with additional supps & TCM diet, esp. for gut, for my intolerances, deficiencies, exhaustibility etc...

 

[cookiebaker]

it can be pricey

really? I have found the opposite to be true.... a 90 day supply of 4.5mg cost me less than $50, but I suppose location often has something to do with price differences.

the powder isn't available.

not sure how it is in Europe, but it is a prescription only thing here in the US. without a prescription, you wont get it.

 

[JayCS]

really? I have found the opposite to be true.... a 90 day supply of 4.5mg cost me less than $50, but I suppose location often has something to do with price differences.

Here the main thing pricey is that I'd apparently have to buy a whole kg (90€) altho I only need a "split" of that. That's because I haven't found a pharmacy that compounds it for others too.

not sure how it is in Europe, but it is a prescription only thing here in the US. without a prescription, you wont get it.

Prescription here too, which my cardio is prepared to do, already tried. But the wholesalers don't have it at the moment, so not even my trickiest pharmacies can make them for me.

 

[Sabina]

Yes I meant Epstein Barr.

 

[Sabina]

really? I have found the opposite to be true.... a 90 day supply of 4.5mg cost me less than $50, but I suppose location often has something to do with price differences.


not sure how it is in Europe, but it is a prescription only thing here in the US. without a prescription, you wont get it.

I paid $187 for a 90 day supply! I am shopping pharmacies now!

 

[Auriel]

Yes I meant Epstein Barr.

THE KISSING BUG!!!!!!!

 

[cookiebaker]

I paid $187 for a 90 day supply! I am shopping pharmacies now!

wow, that is insane.

Mine comes from a pharmacy associated with the clinic i have gone to for a long time.. altho i am thinking very seriously about changing that in the near future.