New here from NY. Give me all the support :)

[jnbrown53206]

Hi all,



I’m a newbie here and my name is Jasmine and I’m so glad that I found this site! Knowing that other are dealing with chronic pain has been helpful on my journey to healing.



I’ve always been the type of person to just “push through” the pain but about 5 months ago in September I found out that I was laid off and had a flare up so bad that I realized that there was something bigger going on with me. I initially assumed that my upper body pain, brain fog, chronic tiredness and sleep issues were due to stress so I confused them burnout from work. Then about a month or so after my layoff, my sister tragically passed away and despite being on the fence about antidepressants I knew the right decision would be to start Wellbutrin to treat the anxiety and depression. However, despite feeling better mentally, the above pain symptoms still persist. This led me to doing some research and it’s where I discovered that the combination of all of my symptoms could be due to fibromyalgia. It has been such a relief to finally put a name to everything that I’m feeling, but my journey is just beginning.



Right now I am in the process of completing blood work, MRI’s and a host of other tests to rule out thyroid issues etc. I’ve also recently seen a pain management specialist, tried acupuncture, and have appointments with a Neurologist and Rheumatologist, but I admittedly have a hard time advocating for myself when it comes to healthcare.



I lead with all of that to ask if there have been any particular tests that I should push for to rule out other potential health issues that could be causing my brain fog, pain, fatigue etc? I want to ensure that my doctors are accurately diagnosing me.



Lastly, when it comes to the job search right now I find it really difficult to figure out what to do next considering my flare ups, chronic fatigue and memory loss. I’m trying to be positive, but I don’t see a path forward with working BUT I need the money. During the pandemic allowed me to work from home so I was better able to hide my symptoms (ie napping throughout the day, being able to google words on the side that I can’t remember when doing presentations virtually) but going back into an office full time would limit those things.



Side note: I’ve noticed in the past that a when I mention my symptoms they’re not taken seriously by colleagues/managers. So I’d additionally appreciate any advice on how to navigate work/ job search and relationships with peers and colleagues while dealing with chronic pain.



Sincerely,



Someone realizing it’s okay to not be strong all of the time

 

[sunkacola]

Hi Jasmine, and welcome to the forum.

Glad to hear that your doctor is doing all of the appropriate testing to rule out all of the other things that can cause symptoms similar to fibromyalgia. This is a very important first step, since there is no definitive test that proves a person has fibro.

If you want to know all of the things that have similar symptoms, you can search for that on the internet. But your doctor may not test you for all of them, because in some cases there will be a certain symptom or other indicator that is always present when a person has that disease or syndrome, and if you don't have that there's no need to test for it. Having the list would just give you information that you could discuss with your doctor.

Job search is definitely challenging with fibro. You may get others responding who can tell you what they have done. I was self employed with my own one-person business, so I did not face that particular challenge. What I would say is the best thing would be if you can find work that can be done at home at least most days of the week, because if you only had to go to an office one or two days each week you could probably manage that. As for whether or not to disclose your physical challenges in an interview, I think it depends on the circumstances. If you are highly qualified and present well in the interview, and mention it in terms of full disclosure but indicate that it will only mean a few days of non-working or working from home per month, it might be best to mention it. If, however, there is tough competition for the position you will need to assess whether or not to disclose it, and what the consequences for you might be either way.

When it comes to co-workers and peers, I always caution against revealing too much. It's really not their business unless they are also your close friends. Simply saying you don't feel well should be sufficient for someone you don't know, and of course anything you say to a coworker can be repeated to everyone else as well.

Here's a post with some suggestions for things you can try on your own in order to discover what your particular triggers may be, and also what you might be able to do to help with your symptoms.
Ask any questions you want to ask, and feel safe here to tell us how you are. We are here to help one another, and you will find a lot of support here.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[MissNeverWell]

@jnbrown53206 I can identify with your concerns about stamina and disclosure in the workplace. I have had another disability my whole life that prevented me from working in mainstream employment, despite finally getting a Bachelor of Social Work degree and Career and Work Counselor Diploma. As a result, I developed a self-assessment tool called D.I.C.E. (Disability Impact on Career/Employment), and tried to develop my own business. There was some promise but it didn't work out. However, before the business went under, I converted the assessment tool into a self-help e-book that is available for free. In terms of effect of fibromyalgia on stamina, work performance and accommodation needs, the key is looking at the job duties and whether or not they will aggravate symptoms or impairment of tasks. For example, because of my motor and visual spatial learning disability, I could never learn how to drive, so that eliminated essentially all social work/career counselling jobs. Given my problems with organization and time management, administrative duties exacerbated my symptoms. The key in terms of disclosure is whether or not the tasks involved will be impeded by the fibromyalgia symptoms. If not, then disclosure may not be necessary or wise. However, should problems arise on the job, then your right to accommodations is seen as less legitimate to an employer because they were not aware of your needs to begin with, and it harms the element of trust in the employer/employee relationship. There are several stages at which you can disclose - the call for the interview (not recommended unless it is a visible disability that may surprise the interviewer and cause discomfort for you both); the interview (the problem with that is the focus is then switched to your disability rather than your strengths), when you've been offered the job (the most feasible time to disclose because now you have legal backing), and when the disability starts affecting job performance (the least preferable stage). There are no right or wrong answers; it is a judgment call based on the type of job, the degree to which the company is an equal opportunity employer, and whether or not accommodations are needed.

 

[Auriel]

Hello jasmine yes, (it's actually bad for you to be strong all the time) welcome to the forum btw , I've learned the hard way how dangerous it is to stuff down feelings all the time (or not acknowledge them (cos they do come back in some way) ️

 

[Auriel]

Also I was wondering if you've ever been offered bereavement counselling? (We think as people the way to get on is just to get on with life best as normal, but after losses it changes you) antidepressants can help with "certain" things sometimes (though mine have been more harmful for me than anything having the opposite effect) but it doesn't stop the missing and loss feelings (and if taken for traumas they don't stop the memories and pts/cptsd?) And loss can come in many forms? (And it really doesn't help if people around you really aren't that understanding

 

[jnbrown53206]

Yes. I have a grief counselor that I see weekly and a support group.

 

[Auriel]

Sooooo glad ( I might need 1 too)