Finally a diagnosis. What now?

[MzV]

Hi all:
I am newly diagnosed with FM but have over 10 years of pain, referrals to specialists, labs that were inconclusive, and finally a diagnosis of what I have suspected for a long time. What do I do now? Pain doc is trying new meds. My problem is that I work in a high stress job where I am required to stand all day. By the end of the day I come home in so much pain that I can't do anything. The symptoms have started to affect my work and I have cut back hours. How do I explain to my boss that I need to sit for a few minutes to decompress? Is this considered a disability? I am 57 years old and have about 10 more years to work. What if I can't do it? I feel as if I am going downhill. I am sure you have all had these thoughts. Any tips? Just needed to vent. Thanks for listening.

 

[Jemima]

Hi MzV,

Welcome to the forum. Great to hear that you have a diagnosis after such a long time trying to get to the bottom of things!

Your profile doesn't say which country you're in but, as far as I have understood, fibromyalgia sufferers can qualify for disability in a lot of places. It seems that it tends to be a challenge to secure, and I'm not a great person to advise. Perhaps someone will jump onto your thread here with some good info, but if not, you can use the search button at the top of this webpage to search the forum for other discussions that might be relevant to your situation.

As far as trying to keep working - and just in general - the best advice I can give is to take a multi-pronged approach to trying to manage your symptoms. Most of us find that if we can build up layers of small strategies that help, it can make a real difference to how well we feel overall. This might allow you to continue working a little more easily, although fibromyalgia tends to kick back when we try to push through it, so sorry to say it's likely to remain a balancing act! Perhaps if you explain to your employers what you're dealing with, they might be understanding? There has been quite a lot of media coverage of fibromyalgia lately following the discovery that it is autoimmune, so you could direct them to an informative article to help them get the idea!

If you go to the pinned post at the top of the General Discussion section of the forum, you'll find Sunkacola's tips for managing fibromyalgia. This is a great place to start - especially if there is anything there you've not already started doing. For my own experience, stress management was absolutely vital for reclaiming some of my ability to function normally. A sleep management strategy, gentle daily exercise, and a supplement regimen also helped a lot. Some find medication really useful, while others (me included) find that the side effects outweigh any potential benefits. Do research any medications that you take, so that you understand what you're dealing with if any issues arise.

Ask away if you have any questions, and feel free to vent whenever you need to - we all have to let off a little pressure sometimes! Everyone here will understand

 

[MzV]

Hi Jemima
Thank you for your quick response. I need to set up my profile. I am from the US in California. I work in a hospital pharmacy and it is a high stress job where I am required to stand for my 8 hour shift. I have stopped taking extra shifts but have not told my employer yet. I will continue reading about this and work on strategies to handle this. Your comment about "pushing through" is something I have always done but maybe it has caused me more harm than good. Having this forum will help me find my way. Thanks for being here.
V

 

[Svidaurre]

In Texas Fibromyalgia is a condition that you can receive SSDI, but need MD documentation and difficult to get if only existing condition is fibromyalgia. My experience with SSDI is that you are over 50 you have a greater chance of approval. Continue to manage but I would look into this option. I was denied (before fibromyalgia diagnosis, simply because I wasn’t 50 yet Lol. I am laughing now. I hope this helps. Take care,
Susan

 

[Auriel]

Svidaurre, are there organisations in your area?, in Britain we have something called called The citizens advice bureau, they help people fill in forms , help people in debt/legal matters, housing, homelessness, just everything. In one of our local council offices there’s an advocate organisation that fight for people who’ve been unfairly refused benefits ( don’t know if you have the equivalent there) but I can’t imagine how painful it must be standing for that long every day , I was offered a job working in a charity shop, they insisted I stand for the duration + continuously smile while welcoming people in, i neither wanted the agony of standing for 8 hours , or permanently grin while welcoming people in like some kind of stepford wife ( I think it would be more scary than encouraging) but seriously you get my total sympathy, hope you get the conclusion + outcome you seek, if not come to Britain

 

[Auriel]

Mzv. That’s such a good plan , fibro’s a nightmare , I just found this thread, I’ve had a weird couple of weeks of it, sleeping problems,+ things, but I hope your boss is lenient to you, I’m sure you’ll sort out what you need regarding work+ health. I’ve kind of mingled a response to you and svidauree up it for both of you in one message ( I’m kind of unfunctionable right now) I think I need to message when I’m more alert?

 

[Auriel]

Jem by name gem by nature, that’s the way it is This is my hello for today cos I can’t function tidy , so I’ll come back on when I’m more ‘with it’ x x x

 

[Jemima]

Jem by name gem by nature, that’s the way it is This is my hello for today cos I can’t function tidy , so I’ll come back on when I’m more ‘with it’ x x x

So sweet, you too. I'm in the saaaaame place these last couple of days - too much going on last week and now the fall out, but will bounce back soon enough See you on the other side lovely one