Fibromyalgia advice

[iamitpal]

Hi all,

I have some questions, thinking some context might be helpful first (questions at the bottom of the ramble).

I'm currently experiencing a pretty intense flare up of pain that's overlapping with sciatica and costochondritis. This has been going on for almost 3 months now. I was told by my physical therapist to check out online Fibromyalgia forums. This forum has already been helpful and I'm grateful it exists.

I was basically unofficially diagnosed with Fibromyalgia by a rheumatologist 8 years ago and yesterday by my primary care doctor. Hoping to get an official diagnosis in my chart at my next primary care appointment. Mostly hoping to get an official diagnosis so that I can potentially receive reasonable accommodations through the Americans with Disability Act (ADA) at work and then in grad school when I start Fall of this year.

I sit for 8-10 hours/day at home for my job. I've identified that this definitely contributes to more intense flare ups within my longer term flare up (not sure about the terminology). I already got an ergonomic office chair (on the cheaper side of the HUGE spectrum of cost for good chairs) along with a lumbar support accessory and a balance disk for the seat which is all luckily going to be covered by a quarterly wellness stipend that was just instituted at my workplace.

I'm grateful for this coverage, however, this isn't enough. I feel trapped in my pain and need some relief. I've been doing extensive physical therapy, heating pads, drinking lots of turmeric tea and taking many epsom salt baths (honestly, the most helpful temporary remedy, so far). I'm about to try acupuncture and massage therapy (hoping these will be covered by my insurance because my health bill is really starting to add up).

So after all this rambling I come to some questions:

1. Has anyone here been able to successfully get workplace accommodations for Fibromyalgia/chronic pain? If so, what were they and what was the process like?
2. How long have your pain flare-up episodes typically lasted?
3. What approaches/methods/remedies/supplements have been most helpful for you, particularly during flare up episodes?

Anyway, that's it. New to this forum (any Fibromyalgia forum, really) and grateful for this community. It gives me some hope to know that there are others out there going through similar experiences who have knowledge and support to share.

 

[JayCS]

Hi iamitpal, and welcome to having come in to us lot here!

You've used terms that I use here: "more intense flare ups within my longer term flare up," so I/we understand, altho I haven't seen many describe it that way.
1. Apart from being on various kinds of disability, my bosses and colleagues try to help me where they can, as they want me to continue to working. There's nothing they can put on paper, it's a question of my development, what I need, like at first having to use a lift/elevator, a place to lie down. The process is continuing. It depends on their and my social competence and learning to detect my needs and how they change and explain them adequately.
2. I'm a more rare case in that I've been in a full flare for >2 years, after 8 years with Ache off and on that didn't much impress me, but made me & my docs curious what was going on, wondering about it being this strange fibro-thing we didn't know much about, other than it hurts.
Due mainly to many supps & exercises & other physical therapy, I've managed to get my quality of life up and work a bit. Inside of this full flare, my/our flare-ups last according to how much I'd been overdoing it before. I make a difference between the Ache caused by overdoing my physical activities and various local pains due to actions like standing, sitting, walking, GI problems. I've managed to get these local pains down to zero, but not the Ache and not the exhaustibility.
3. During these relative flares I can't do much else than I normally do, just rest even more. Cold showering is one thing that improves my Ache, pains & sleep, which goes to show how individual we are. There are 150-200 "treatments" to try, to improve the chronic situation, and we all react very individually different to them, so it's better to get a bit more specific. Others may answer 3 things, you will try them and they likely won't help. I'd tried 30 supps & 20 types of physiotherapy, "before" starting to find some that helped me, "20" types of diet, none of which helped... Essential oils didn't much. 2 psychotherapists before the 3rd helped, 5 kinds of relaxation, but yoga nidra now most. You can also approach this problem by learning to describe your symptoms, prioritize them, and hunt their triggers. Trigger hunting worked from the start for me.
In general, @sunkacola's advice post pinned at the top of the forum is the best starting point.
For more depth & detail this long post of mine might be of interest: How to grieve, self-motivate, track symptoms, hunt triggers, decide & follow thru on treatments

Regarding your sitting, altho you haven't asked, I sit mainly on the floor, leant against something, twist-stretching legs & torso in various ways to increase my suppleness, and stop stiffness by moving regularly, or if need be on a swiveling, adjustable bar stool. Pre-fibro and still now for a time I have a bar table, so try to work etc. standing/moving... Exercises to decrease local pains help standing, sitting, lying down, moving.

The treatments you use and are going to try are all some that might work. Acupuncture works only for some, it harmed me, whilst acupressure, incl. ear acupressure worked. Now I've grown out of it and seem to be managing all my pains myself. If something crops up, youtube always helps, the symptoms and either "acupressure" or "exercises". A massage pistol has become a useful tool of late. So both going easy on the bills now, after leaving the cryotherapy and expert acupressure. What isn't easy on the bills at the moment is my 30 supps (not just for fibro tho, got a lot going on): Some are very cheap, including those that work best & with immediate effect, but some are extremely expensive and it all adds up. But at the moment I haven't much choice.

 

[sunkacola]

Hello @iamitpal .

Welcome to the forum, and I hope it and we here will be useful to you. We are here to help when we can and support one another.

As far as a diagnosis and the ADA is concerned, Fibromyalgia is not considered a disability under the ADA, so you will not be likely to get special accommodations through the ADA. For instance, you cannot get a disabled parking pass, or a service dog by having a diagnosis of fibromyalgia.

Now, if your fibromyalgia makes you unable to walk without a cane or walker, puts you in a wheelchair, causes you to fall frequently and have a hard time getting up, or otherwise disables you in a specific way then that specific thing may be considered a disability that will allow for the accommodations you seek.

As far as workplace accommodations go, that is very largely up to the employer. They have to make it accessible to people in wheelchairs, and allow a service dog if you legally have one due to a recognized disability, but beyond that they are not required by law to give you any special accommodations for having Fibro.

Having the diagnosis be official is a good thing, though. It allows you to put something on insurance forms so as to get various doctor visits covered.

Sitting is not good for too long. If possible, get up every hour and walk around, even if only for five minutes. If this is frowned upon, you could have a good talk with your employer and see if they will allow it once you explain you have a chronic pain condition. I often just say "chronic pain condition" because a lot of people won't ask more, and some people will turn their noses up at the work "fibromyalgia" because they don't "believe" in it.

Basically, you need a good working relationship with your employer. Many of them will, if your work is exemplary, make reasonable accommodations for you if you ask.

As far as what you can do for yourself in terms of approaches/remedies, there are so many ways you can help yourself!
JayCS linked in his post to my post of advice for how you can manage your FM and quite possibly make it better. Any questions you have on any of that, feel free to ask.

Workplace accommodations for me --depended entirely on the employer. Some were reasonable and others were not and finally I just quit working for others and started my own business. That worked better for me.

And as for flare-ups you will find that this varies so much from person to person and from time to time with each person that I don't know if there is any information truly relevant for you. But since you asked, my flares usually last from one to five days, in varying intensity.

Let us know how we can help.

 

[iamitpal]

Thank you for thoughtful and thorough reply @JayCS! I'm glad to hear your bosses and colleagues have been supportive. Sorry to hear that your flare up has lasted for so long and that all those supplements and treatments are adding up cost-wise. My health bill is ridiculous this month with all the doctors, medication, supplements and a good old ER visit to really add things up.

Thanks for the tips and I'll definitely check out the threads you linked. I just got recommended by a doctor to take Magnesium, Turmeric pills and Omega-3 Fish Oils for my sciatica and costochondritis. We'll see how it goes.

 

[iamitpal]

Thank you for this @sunkacola, this was very helpful! I was reading that because I check all the boxes below my case of Fibromyalgia would be covered under the ADA if I'm understanding correctly:

1. Does the employee have an impairment? If yes,
2. Does the impairment affect a major life activity? If yes,
3. Does the impairment substantially limit the major life activity?

That link also has some helpful accommodation ideas I'd never even thought of.

I have a feeling that I won't need to take a super formal route though with my employer because it's a tiny organization and we're on decent terms. Just trying to be as prepared as possible for when I present an alternative work/accommodation plan. I just yesterday talked to someone who supervised someone with Fibromyalgia in the past who said that they were able to make a flexible, more asynchronous schedule work out for both him and his direct report.

I hope to have a diagnosis comes quick so I can start getting more covered by insurance.

I'm learning more and more how Fibromyalgia manifests so differently from person to person. I hope some more medical research and information comes out about it. All the different potential avenues are a bit overwhelming. My flare-up I think started in early November from a combination of doing a kick wrong in the martial art I practice which caused my sciatica and having a lot of stress at the time. Thanks for taking the time to write out such a detailed response!

 

[JayCS]

Magnesium, Turmeric pills and Omega-3 Fish Oils for my sciatica and costochondritis.

Thanks back! - Good choices - always good if you have the right magnesium types and tolerate the anti-inflammatory spices!

 

[sunkacola]

@iamitpal , I have edited your post to remove the link. We do not permit outside links on this forum unless it is clearly seen in the link that it is to an approved site, such as .gov, .edu . Please read the forum rules for more information on this.

I did check out what you are talking about, though, and I see that FM could actually be considered a disability iof a person's condition as you say checks all the boxes, since the Act itself is vague. Thank you for mentioning this, as it is probably going to be information others will want to have as well. If an employer were not willing to make any accommodations, though, it would probably not be something you could very easily fight. Would probably be better just to get a new job, if that is possible.
But if your employer is understanding, there's no need even to bring in the ADA at all. I wish you the best in getting the accommodations you need.

 

[iamitpal]

@sunkacola sorry for missing that forum rule. Yeah I'm hoping I don't have to even bring the ADA into it all. Thanks for your responses!

 

[Jemima]

1. How long have your pain flare-up episodes typically lasted?
2. What approaches/methods/remedies/supplements have been most helpful for you, particularly during flare up episodes?

Hi imaitpal,

I see you've already had some great advice here, but I thought I'd add in that my flares can also be really variable. The longest ever lasted more than six months, I've had a few that lasted a couple of months, but most pass in weeks or even a few days.

I can't advise on getting support from an employer because I work for myself at home, but I agree with Sunkacola that getting up regularly is important. I also work behind a computer, and so I try to make sure I get up regularly and move every day. At the very least, try to stretch and change positions sometimes - if you're stuck on the one chair, this could be as simple as putting a foot up on a small step, or whatever else you can do to shift your posture a little bit through the day.

Whenever I'm in a flare, I usually start by trying to identify what might be triggering it, which for me usually means tapping into any current stressors and trying to manage my response to them a little better. I use mindfulness excercises like breath work and body scans to pull myself out of a stressed state. Eating right and upping my game on sleep hygiene is also crucial for getting things to calm down.

RE supplements, I found magnesium really helpful - it makes me feel calmer and improves my sleep, which for me is half the battle! I also find boswellia helpful for flare symptoms. I think one of the biggest things with flares is that we can't push through them - instead, we have to be compassionate towards ourselves and dig deep on the self-care. I really hope you feel better soon and that your employers are sympathetic to your needs.