A small point on my journey with fibromyalgia


By putting my nose in my administrative paperwork this morning, I decided to share with you, today, my path of fibromyalgia: an obstacle course … Yet, honestly, I am still aware of the luck that I because medical wandering was reasonable in terms of time. It should be known that many people with fibromyalgia have waited sometimes years before having a diagnosis. It’s silly to say but being able to put a word on our troubles is already, in itself, a deliverance seems to me because it allows to regain confidence in oneself. I have heard all too often “but it’s in your head, ma’am” … to the point of doubting me, my pains, my good sanity.

Year 2014 : Diffuse pain appears in November following surgery to remove an L5-S1 disc herniation, which took place in April 2014.

Year 2015 : more than 160 days of work stoppage

December 2015 : Diagnosis “fibromyalgia” with a rheumatologist I consulted without a prescription because my GP did not want to fill me one when I asked him (supposedly it could not be a fibro because I had too few pain points).

Year 2016 : 40-day work stoppage

January 2016 : Beginning of the follow-up at the Anti-Pain Center (collective sophrology sessions + magnetotherapy sessions + acupuncture sessions + sessions with a psychologist).

January 2016 : Beginning of hypnotherapy sessions.

November 2016 : Refusal of 100% support for ALD

December 2016 : Care agreement for continuing care under Article L.324-1 (right to reimbursement of transport costs up to 65%)

August 2016 : Filing of the MDPH file

  • RQTH, Recognition of Quality Disabled Worker with 50% <= TI <80%
  • CPPH, Priority Card for People with Disabilities
  • Refusal for PCH, Adult Compensation Benefit
  • Refusal for AAH, Allowance for Adults with Disabilities
  • Refusal for AAH Resource Completion
  • Refusal of the parking card

Year 2017 : I have not worked … and I do not think to resume for the moment.

January 2017 : Appeal to the MDPH because of the flagrant deterioration of my state of health accompanied by a medical certificate that mentions the need for a third person daily for the everyday acts of life due to an addiction major.

January 2017 : prescription for the purchase of a manual wheelchair and a cane.

February 2017 : Appointment with CPAM’s medical adviser (see article here )

February 2017 : Appointment with a rheumatologist specialized in fibromyalgia (see article here )

February 2017 : Completed Home Help Application (see article here )

February 2017 : Beginning of balneotherapy sessions.

March 2017 : 2nd appointment with a rheumatologist specialized in fibromyalgia (see the article here )

April 2017 : Convocation for an interview with the doctor-coordinator of the MDPH to follow up my request for appeal.

April 2017 : Making contact with the occupational doctor for a part-time therapeutic recovery, I am directed to the SAMETH service (Active Solutions for Maintenance in Employment) which depends on the AGEFIPH

-> Highlighting the difficulties in the field of work: going to work / mobility in the workplace / workstation ergonomics / working hours / cognitive difficulties

May 2017 : Reception of the notifications of the MDPH => suite favorable to the application of disability card and Allowance Adults with Disabilities (AAH) because, after examination of my situation at the consultation of April 20, 2017, my rate of The disability has been revised to be equal to or greater than 80%. As a bonus, I am eligible for human and technical PCH.

June 2017 : Appointment with an occupational therapist from the MDPH to better appreciate my difficulties given the disability born of fibromyalgia in order to assess my need for PCH (Disability Compensation Benefit).

-> That day, I was going relatively well (it was hot, the summer is a period where I have some periods of respite). The occupational therapist found that I was able to bump, bend down, pick up something on the floor, lift my wheelchair because that day I decided to be honest and not to simulate , too happy that I was able to live more or less normally. The difficulty of the occupational therapist was to quantify the help that I may need as the disease is progressive, chronic and so capricious.

June 2017 : Prescription for two orthoses for wrist.

July 2017 : Beginning of osteopathy sessions.

August 2017 : Appointment with the medical adviser of the CPAM => my request for resumption of part-time therapeutic therapy for the start of September is put in abeyance to the extent that the medical consultant finds me too exhausted, she advocates a recovery for All Saints’ Day (I’m a teacher).

October 2017 : Foot reflexology session.

November 2017 : Sending a letter to integrate the Anti-Pain Center of Nantes.

November 2017 : Session of PCP Therapy.

December 2017 : 2nd appointment with an occupational therapist from the MDPH to better appreciate my difficulties given the disability born of fibromyalgia in order to assess my need for the PCH (Compensation Benefit of Disability). Indeed, the last time was not very revealing of my general condition and, as a bonus, a lot of things were not discussed during the interview (there was no mention of the technical aid). need a manual wheelchair to move me outside).


Leave a Reply

Your email address will not be published. Required fields are marked *