Hello; anyone not able to work due to their FM?

Welcome Introductions
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Hi, I’ve only known I had FM for about 4 years, since my lymphoma diagnosis and chemo (which may or may not be related to the FM onset?), and I’m 58, which I know is a bit old for onset of FM. I also suffer from treatment resistant depression which I’ve had almost my whole life. Anyway, about 4.5 years ago I stopped working due to a new, more severe depressive episode, shortly thereafter was diagnosed with lymphoma, then shortly after that had chemo. The chemo ended up causing a heart condition (CHF), and then I started having symptoms, coming on gradually, of arthritis and FM. I saw a rheumatologist at Stanford for about a year, who only diagnosed osteoarthritis . Stanford apparently does not “do” FM diagnosis, or at least that particular doctor did not, even though in retrospect I was then as now having pain in all 4 quadrants, in muscles as well as joints. Anyway, now I have all the symptoms of FM: the significant chronic fatigue, the chronic significant widespread pain, and the brain fogginess/fogs. I have had several significant flares and what I call mini-flares. I never ended up being able to go back to work (I was a physical therapist), and know I could still not work at this point. I have pain in both shoulders, upper arms, elbows, lower arms, hands, fingers and thumbs, my neck, mid and low back, both hips, thighs, knees, and sometimes lower legs and toes as well. I still deal with depression and the fatigue, which I am seeing a good psychiatrist for; we keep trying different meds and combinations, which sometimes help, mostly not much. I struggle to not spend all or most of the day in bed. It is hard for me to get out of the door, and sometimes to the door, mostly due to the feelings of major fatigue & weakness, as well as the pain.

The better news is that finally my pain is semi-controlled. I am using CBD capsules (cannabis, now legal here in CA, before that I was using it medically). The CBD helped me get off opiates (norco, 3 x/day). I now only take the norco when in really bad pain. I need to take 1 gm. of tylenol 3 to 4 times a day/night however to control the pain. I am also on lyrica, 200mg 3x/day, which I feel helps, but only some. Also using cymbalta for the pain and depression, which I feel probably helps both somewhat. With all these meds my pain is what I would call manageable most days, unless in a flare. Yet it seems to be easy for me to flare, such as long car drives (back, arms) or most forms of exercise particularly even a “senior” exercise class.

A new med my psychiatrist and I are experimenting with in order to deal with the brain fogs and low energy is long acting adderall. I previously tried short acting ritalin and adderall but could not deal with their side effects. I only just started the long acting one, am slowly titrating up the dose. It has not yet helped but stay tuned.

My husband who was my caregiver died suddenly 11 months ago, which was a big blow. I now live alone. I have no kids and I am living semi-rurally in a newish area (my husband and I moved north of San Francisco, where we used to live, after my cancer treatment.) I really have no friends here, on account of not going out much.

That’s my story for now. I am interested in hearing from others mainly who cannot work due to their fibromyalgia for now. Thanks everyone.

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Hi I’m new here and just wanted to reach out. I haven’t worked traditionally in a long time. I’m my daughter’s caregiver. I am so sorry to hear of your loss. You sound like a fighter for sure, you give me courage. I take alot of rest periods and I’ve simplified my life. I used to be my friends counselor but I stopped playing that role. This is a lonely battle with chronic fatigue and pain and we have to put our health first. Thank you for sharing your courageous battle.

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Reader1,
Thanks so much for your kind reply. When you wrote that dealing with chronic pain and fatigue is a lonely battle, I can relate to that. I’d like to hear your story in more detail so if you have posted it on this site elsewhere, please let me know where. I hope caring for your daughter is manageable for you. It was very nice to hear from you.

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I was a bedside nurse for 6 years and had to take a year off. I could not keep working for obvious reasons and never got better so I work a desk job now that is low stress. I am also considered teaching and case management. I also have a hard time driving to work which is why I am only part time. A desk job on a computer has its own challenges and pain.

I am glad to hear the CBD capsules work for you. I am considering that since I am also in California, I usually stick to edibles like chocolate but they are pricey.

Thanks for sharing your story. Mine may not be relevant because I am working, but only with major adjustments.

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Meow,
Thanks so much for replying. I’m glad you did even though you are working a “modified job”. I feel for you since you also work on a computer, I can imagine the problems resulting from that (actually I know, as I have issues even typing the little I do here at home).

CBD capsules are also quite pricey. And I have to take other things as well for decent pain management (cymbalta, lyrica, tylenol). Anyway, good luck with everything and I hope we cross paths again soon. (I am new here so if you have a introductory piece of your own, can you let me know so I can learn more about you?). Thanks again.

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Hey fibrogal, reader1 here. I’m 53 and really just in the last year or so facing I’ve probably had Fibro for years. I knew I had arthritis in some areas but there were missing pieces. My next Dr. aptt I promised myself I’d at least ask what he knows. You know I was a runner as a teen and I would tell myself the pain was from that. But the fatigue, focus issues and varying degrees of pain, not to mention getting sick easily, I had questions. That’s where I’m at now.

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Hi, Fibrogal, I just wanted to comment further—I’m so sorry to hear of the loss of your husband and your other trials with illness as well. You’re suffering greatly, and I’m just so terribly sorry.

First, keep on trying with your psychiatrist, sometimes depression is stubborn and just does not wish to comply with our best efforts to evict it from our lives. I’m going to also go out on a limb and mention ECT, as I was listening to an NPR story about it the other day. They spoke of Kitty Dukakis, who was very public with her fight with depression, her treatment with ECT and also how they’ve improved the process so the side effects are quite minimal. I have had terrible depression, and I know how you feel.

Also, how distressing for you to hear that your doctor at Stanford doesn’t “do” FMS diagnoses. They have a whole bunch of docs there who presumably do, and I encourage you to look here to find somebody, just start calling and ask if that doc treats fibro: https://stanfordhealthcare.org/search-results.doctors.html/Rheumatology
Stanford’s website also mentions FMS and its treatment.

I hope perhaps you can make some progress here. I’m hopeful on your behalf.
Xxoo

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What a great response, Lynne. Your info was so helpful. I have gone back and forth and so has my psychiatrist re: ect for my depression. Now with the option of TCMS (if i got that right; I mean transcranial magnetic stim, now on a commercial I saw under the trade name “Neurostar”, I figured I would try the TCMS rather than the ect, which I have been afraid of. I am aware that ems has less side effects now, just worry about the memory among other issues. I wonder, have you yourself tried ecm, and if so, has it helped you?

Wow, it was extremely kind of you if you actually visit Stanford’s rheum site to clarify whether they treat fms (if you did that, or already knew that). I did not, so your info was news to me. I am happy they now (or even back when I saw that one doctor) deal with fms. My doctor there did a lot of puny types of palpation, but he seemed intent on merely deciding whether I had rheumatoid arthritis vs. osteoarthritis. I know his palpation skills were poor since I was a P.T. and knew how to palpate muscles, tendons, joint capsules, etc. I don’t know if at the time he was trying to r/o fibromyalgia, but I actually doubt it. I think he probably did not deal with it. We parted under strained terms, I wrote him emails saying I was still having pain in several different areas , and pain did not correspond with osteoarthritis “flares”. He did not question fibromyalgia in his responses. Anyway, due to your email, I will call Stanford and see if they will give me an appointment with a rheumatologist who deals with fibromyalgia. I hope I didn’t step on any toes; I understand the doctor I saw was the most or one of the most senior (and respected) doctors there, so I have concerns that I might get an unbiased assessment from the new doctor. Anyway, thank you so much for your compassionate and thoughtful response and for appreciating my struggle. I’m sure I will appreciate your struggle as well. I will try to find your intro info if I can, or if you can, please direct me to it so I can know more about you. Thank you!

Jean King
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Well Jean, I’m kind of giggling at your eval of the doctor’s sorry (“SAD!”) palpitation skills. My rheumatologist elicits noise from me when she checks those trigger points; let’s just say she is “thorough.” And an incredible clinician, and I believe it’s largely due to her listening skills.

Though I won’t claim to know enough to really be able to tell, my thought is that your prior doc was just wrong, and was prideful about it. (Because maybe he was a poor listener, just saying.) I feel certain that you can call the Stanford folks and deal with wanting to try another rheumatologist in a pretty low key way, and they’ll be discreet. This sort of thing does happen all the time, and it’s not necessarily somebody’s fault—just an imperfect match. And, I did indeed go to the Stanford site, and found my way quickly, simply because I have a lot of experience at doing just that, in various cities I’ve lived in. And remember, it wasn’t that long ago when fibromyalgia was thought to be “all in your head.” That doc may be an old guard member who falls in that category. And not doing you any good. So, bye Doctor Already Forgot Your Name!:wave:

I was checked out recently at McLean Hospital (Boston) by a neurologist and a Psychiatrist, the former having a TCMS specialty. (Dr Shan Siddiqui, MD who I believe has an article or two out there, google him if you want, I believe you can find at least one or two articles not behind a paywall.) Who also indicated it likely wouldn’t be covered by insurance.

And, have you discussed the ECT and side effects in depth by either your doctor or someone who uses it in their therapy? It’s changed a lot in the past 20 years even. I should look that up.

Can’t remember if I mentioned this in here or another different forum: I knocked all the gluten from my diet. I avoided thinking about it for a couple years, then just jumped off.

Well, I seem downright garralous tonight, though. I surely don’t know everything. But if anybody can benefit from my research, I just glad to share it!
Best,
Lynne

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Lynne,

Thanks for your in-depth response, absolutely no need to apologize for garrulousness, I frankly love it: and you had so much great info to impart. I really appreciate your thoughtful and helpful responses.

Gluten first: I removed most or all gluten for a couple months, then went back to eating bread, pasta for a few days (was out of town), and after a couple days, boy if I didn’t feel more joint and muscle pain, like even sharp for a few days. Actually, I haven’t gone strictly gluten free since, but will now, especially after reading your post and several others. So thanks for that.

ECT: yes, I have thought about this for years, and am aware of how it has changed a lot in the last couple of decades. I have a master’s in clinical psychology, so I know some things about the ect treatment. It is still an option in my mind, but not for now. Like I said, for now I’d much rather try the tcms. (By the way, I think you are lucky to be surrounded by such great doctors, but of course you deserve that). I was really thrilled to hear about the “neurostar” treatment on a commercial, like I said. Tcms is not available in my county, but under guise of “neurostar”, I hope it is available here, or will be soon (I checked the website 2x, both times it was down). Thing is about that, you do the treatment like 5x a week for a number of weeks, so I have to find a local place for it.

Re: trying Stanford Rheumatology again: for sure I will do that! I plan to call them and try to be “low key” like you suggested to make an appt. with a Rheum. who treats and diagnoses FMS. I am really so grateful that you found out for me that they treat it! In retrospect I’m quite sure the previous Rheum. didn’t screen me for FMS or palpate me, just think he was palpating joints hand and wrist joints to see if I had rheumatoid arthritis vs. osteo arthritis. I think he is a big specialist in RA there. Old guy, like you said, probably of the old school that did not believe in existence of FMS.

I know I’m being super garrulous (snicker), but just as an interesting fact: UCSF Rheumatology dept. will not accept you as a patient if you come in with a diagnosis of FMS (or wouldn’t 3 years ago)! I know because I had a dialog with one of the scheduling personnel. Oddly though, they have a doctor there who is well known for diagnosing and treating FMS. I read about him in an article and wanted to schedule with him, so I corresponded with the department. But trying to be referred there from up here in the country was very difficult. Do you have any ideas WHY they don’t accept new patients who have been diagnosed with FMS already? (I do!)

Anyway, you are great and have been so very helpful, thank you so much again. Again, sorry for my verbosity. I would like to hear your story! Do you know how I can find your intro post on the site? Also, do you live in or near Boston?

Jean/ Fibrogal

Jean King
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Lynne,

Getting back to you re: whether or not Stanford Immunology & Rheum. clinic accepts or diagnoses people with FMS. No, they do not. I called and spoke to 2 people. I told them what you said, that you saw it online that they treat FMS. No, they don’t. Wondering if you were looking at the “Pain Management” department. Can you send me the url, or not if you made a mistake. The pain management dept. is able to diagnose and treat FMS there, not the Rheum dept.

I know it is strange. I did talk a bit with the woman. She wants to see where it says Stanford takes us Fibro patients online, so she can remedy that posting. I looked briefly at the site online and could not find mention of FMS. Very frustrating. It seems your rheumatologists on the east coast are more enlightened than they are here in northern Cal.

Thanks anyway though. Now will try to get an appt. in pain management, I’ve been there before.

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Hi meow,
I am a LPN and the clinic I work in actually has several specialty clinics within it. So I mainly work with the surgeon i am the only nurse for this clinic. If i huff and puff eventually I will get help for a bit. But its for a bit and not often. I am having a flare and usually my flares aren’t this bad or if they are they dont last this long. I am at my wits end. I am scared ro tell my boss I can’t handle my clinic alone & i need help more than once a blue moon or to switch me to a clinic that is less demanding. Just FYI we have clinics where RN,BSN’s are responsible for and are way way less demanding than mine and they also get help for a caseload far less than mine. I can’t stop working I still help my adult children financially and I also help my mother & adult sister financially since my sister lost her job and my mother is having some memory issues. Which I’m trying to get her pcp to attend to. Idk if you have any advice or just words of wisdom or a kick in the butt something on how or what to say if anything ro my nurse manager. Do tou think I should talk to my union?
Thanks…sorry I’m asking to lean on your shoulder :wink:

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P.S. when I am not having such a severe flare I can handle my clinic and then some with no help & I am happy doingnit alone I actually prefer it.

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Jean,

I feel bad that I may have given you misleading information. To be more accurate: on Stanford’s site, they have a topic to read about the treatment of FMS. Now, why they’d have it on the website but not treat it is a mystery. It is true, technically, they don’t say they treat it. But why the heck not?

Here it is, including symptoms, diagnosis, causes, treatments, etc:

Perhaps another large med center in the area?

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Hi Lynne,

Yes, I see that I misunderstood what you wrote re: stanford rheumatology and diagnosing and treating FMS but that really turned out fine as I did find out that Stanford does dx and treat FMS, only not in the rheumatology dept. They do so at the Stanford Pain Management department. I am trying to schedule an appointment with them now! So I really do appreciate all the work you put into giving me the referral back to Stanford. I think it is really strange that even though the american college of rheumatology published diagnostic guidelines for FMS, at both UCSF and Stanford the rheum. departments won’t take you if you have FMS, and at stanford, they don’t even diagnose FMS. So odd and unfortunate for many of us. However, like I said, at least Pain managment clinic will help me. So good for Stanford (not UCSF) at least for that!

Thanks also for sending me what you accessed at Stanford.

Jean

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Hi Andrea, I have lost track if I replied or not. So sorry! I thought I did. I have never worked with a union, but if you feel the work load is spread unevenly then maybe it should be addressed. Do you do more than other LPNs? Do you do part of the RNs job? If it’s an assignment issue, or others not pulling their weight I would talk to your boss. If it’s the manager and not assigning duties fairly, then maybe the union would have some advice. Asking for advice from them may be helpful.

So sorry it gets overwhelming sometimes. I have a pack I take to work just in case something like that happens and my symptoms get overwhelming. Hang in there.

Heather

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Hi Jean, I looked back through my posts and I guess I never did a big introductory post. I thought I had, but with each reply I retell a bit of my story, so I am not sure it even matters anymore. Through your posts, it reminds me we can never give up, have to keep finding and trying new treatment. Now, to find the motivation to do so.

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Well that’s okay, no worries, thanks for finally replying and your positive words. I know what you mean, I shared in one discussion today that I read about pool exercise in this forum, subsequently started a pool class (in a very warm pool) and finally now feel I can exercise again, with little pain and without a big flare! So it is great to read encouraging posts, and never give up hoping and trying new things. Now I will read a couple of your old posts to hear more about your “story”. I do hope you find the motivation soon, I’m sure you will!

Jean King
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Hi, no worries. I know you have a life outside of this group😉 I actually spoke with my NM & ANM when I turned in my FMLA forms. I told them I either needed help or I needed to try a different clinic that wasn’t as demanding & stressful and they said Ok & they were very understanding. And I have already started training a RN in my clinic. I will start training in the chiropractic clinic in July. They also gave me the option of going back to my clinic at any time I want, like if I don’t like the chiro clinic.
You said you take a pack to work…what is that?

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Andrea,

It sounds so good that your work is understanding about possibly modifying your duties and that you are possibly going to work in the chiro clinic. Hopefully that will be much less stress.

I just thought of the American with Disabilities Act. Sorry if someone already mentioned this, but anyway, if necessary you can certainly cite that, as your work is required by law to modify your duties if you have a disability, so you can perform them without any sort of harm, physical or psychological. And if needed, your doc could write a note putting you on modified duty.

Anyway, sounds like you are doing all the right things. I wish you the best of luck!

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