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Living With Fibromyalgia - Online Support Group

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


#11

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.


#12

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:


#13

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.


#14

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?


#15

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


#16

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


#17

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.


#18

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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#19

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?


#20

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!


#21

Thanks, yes I am lucky they are willing to work with me. I was scared to talk to them about it. Just worried bc it could have gone the wrong way you know. I didn’t even think about the ADA, I guess I haven’t come to the realization that thats me😕
I guess I’m still trying to come to terms with it…
Thanks for your kind words😊


#22

Hi Andrea,

Everyone will have different packs depending on what works for them. There was a post a while ago about it, I will post the link below. I include pain medication, wrist and knee braces, heat pack and cold pack, and some topical pain relief like Salon-Pas. I also keep a pair of comfortable shoes in my car since they didn’t fit in my bag. Some people put high energy snacks. See the post, I hope that helps.

Emergency Kit Post


#23

Hi Andrea,

Thanks for responding. PT’s (I am a retired/disabled PT) are generally tuned in to ADA-oriented stuff. I admit, it is real hard to really come to terms with the fact that you are “sick” with a syndrome or disease like Fibromyalgia. Certainly hard for me. Even now, after having had this “syndrome” for years, it is hard to admit that it is a chronic condition, and that I won’t necessarily get a great deal better after 4 weeks of an exercise class or starting a new med, or whatever.

Like everyone here seems to say though, everyone is different. I do still think I can get better, yet maybe not completely back to “normal” or maybe it will take me longer than it does for people who don’t have fibromyalgia. It’s just weird to have a condition that is “chronic”. Doesn’t conform to the typical norms of improvement after an injury, for instance. I have found I need to alter my expectations. But I still have hope, because it is still possible to improve! For instance, I have started 2 low-level exercise classes, one in a pool, after a couple years of near-inactivity, and I definitely am hopeful, because in spite of the relatively minor flares after some classes, I am feeling better than I was before.

Anyway, I wish you hope and optimism, always!

Jean

Jean King
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#24

Hi, I just saw your message. Sorry i haven’t been on here for a while been too tired. Thanks for the tip on emergency pack. I will certainly get one ready. :blush:


#25

Ya I am the same. I know I have this chronic illness and I know I’m hurting and miserable practically all day. But it was so well is so hard to say that I have a disability. I’m so glad youare optimistic about your health I once was hopeful that I would get better but since my symptoms are progressively getting worse i no longer have that hope. But who knows maybe that will change.:grin:


#26

Hi, thanks for sharing your story. I wanted to reply to let you know that I’m 36 and I’ve been dealing with increasing pain over the last 18 months and was working 45 hours a week. I was having a really hard time going to so many medical appointments and juggling everything plus of course the pain was out of control. My depression was also getting worse and worse.

Finally in May of this year I took a leave of absence and then in June I quit completely. I just started a minimum wage part time job where I work about 10-20 hours a week. So far it’s working for me but it was a hard thing to do to not work a full time job. I don’t have any in real life friends either, so it’s a hard thing to deal with. I totally get it.


#27

Mute,

Well you’re certainly not mute here! Thanks so much for responding to my post. I think it’s hard to develop or maintain friendships when one is in pain most of the time, and/or very fatigued, and/or depressed due to the chronic pain and fatigue or for whatever reason.

Ir sure sounds like you were working a lot, which I know when you are working full time or more it is so difficult to do other things. Do you have children or are you in a relationship? I hope you are getting some support around your depression and pain issues. Do you have a therapist? I have a psychiatrist, due to my chronic depression issues, and though I don’t feel he understands me completely, at least in talking to him I don’t feel so alone.

I hope you’re able to make ends meet with your part time job and I applaud you for taking some time off and finding a job that is more manageable.

Please share more about yourself! It was so nice to hear from you, it makes me feel like someone out there understands and empathizes, not to mention is experiencing a lot of the same issues. I hope you find some understanding and support from this forum. Please take good care, and I hope to hear from you again soon!


#28

Just wanted to chime in here with absolute agreement that gluten should be avoided by anyone with FMS. And probably more disease states than that; but… just stating what I know to be true … for me a G-free diet may not have “cured” me, but I think my flares are shorter and those random, sunburn like pains are fewer.And on top of that, my belly is flatter, and I rarely get that uncomfortable bloated feeling after a meal. :grinning:


#29

Girl, I’m right there with you with pain and depression and insomnia. I live in FL and when it gets cold here my whole body shuts down. I don’t really have any friends either. All my friends are married with kids and. Dry active. I think it’s easier for them to ignore me. If you ever need to talk let me k ow. U can tell you that exercise really helps me. And I have Norco for when I’m in real bad pain too. I’m allergic to lyrics and antidepressants. I take Vraylar. I also have PTSD. No fun. I’ve had fibro 20 years now. Drop a line when you get a chance or just need to. Hugs, Erin


#30

Sheila,

Thanks so much for responding so kindly to my post(s)! I hope your holidays were good. I’m sorry to hear about your friend status (I’m in the same boat, as you know) and your PTSD, not to mention the fibro. PTSD must be awful. Yes, I figured out exercise helped, but right now I’m not exercising again. I blame it on the fatigue from the fibro as well as my depression. The depression and fatigue have become worse, starting just before the holidays. That makes sense since I miss my husband (who died about 1.5 years ago), etc. I’m sort of ok with it in a way, or at least I can tolerate it (depression and fatigue) better than before. Fortunately, my pain issues have improved, since I started low dose naltrexone and cbd oil capsules. Please let me know if you want to know more about either one, they have helped me a great deal with the pain issues. (Not so much with the fatigue & depression).

Thanks again for reaching out to me! Means a lot, especially during the holidays. Would like to hear more about you, if you are so inclined. And to offer my support if you need it for anything.

Happy New Year: I hope it brings you better health and greater happiness,

Jean