Our pain is real

[Lily1985]

Hello to all fellow FM mates. I am diagnosed about a year and a half ago. I am very frustrated because my doctor has suggested physical therapy for me more than once but I am disabled and the closest office that takes my insurance and offers physical therapy is very far away and I don't own a car or have a driver's license. Also I did not sustain an injury. And the first thing all nurses, doctors, therapists and x-ray technicians ask is how/ when was I injured, where do I work, did I drive myself there, and do I have any kids. Well I was not injured, I cannot work, I don't own a car, and I have 3 children that were taken away from me a number of years ago now. Needless to say, those questions are what they ask everyone and they are trained to ask those things for safety and legal purposes, but they make me want to throw things!
I ask all who are reading this to please realize that I have never once vented my feelings this way and it's very challenging to me. I am used to bottling up my feelings until they explode. I do have a psychiatrist and I do take cymbalta and of course I know that Fibro is invisible and those who don't have it usually have never even heard of it, much less know what it's like. But I am beginning to wonder if I will ever feel any better at all and I completely despise hospitals and doctors because they are useless and they say to exercise when I can barely get out of bed and limp to the toilet.
I also suffer from endometriosis, HPV (pre cancer of my cervix), depression, migraine headaches, IBS-D and severe dry skin/ rashes.
I am always told to take Tylenol, drink plenty of water, avoid fast food (which I literally never eat) and exercise.
This is decent advice when given to a lazy or very obese patient with bad lifestyle habits. But that's not me!
I always drink lots of water. I would exercise more if my pain could ever be reduced a couple of notches on the pain scale.... I took a very long walk 2 days ago and am still paying for it.
While I am lucky to have a family that loves me, even they can't really help me. Every day when the pain wakes me, I worry that I don't know how much longer I can live this way. I am only 36. I quite honestly don't want to live into my 60's since my 30's are this terrible already.
I had hoped to one day have another child but I have had to give up on that dream because of my health problems.
If anyone has some helpful advice for me or just some words of encouragement, I will be so grateful.
Lastly, I want to thank Jemima and Sunkacola and everyone here who has been brave and kind enough to post here.
I have tried adding vitamin B12 but it gave me no energy boost whatsoever. I have tried using turmeric and cinnamon in my coffee but have experienced 0 effect from that as well even over a period of time. I use lidocaine patches on my back and Tylenol every day but am still in tears from the pain.
All of this to say: our pain is real.
I am always treated by medical professionals as either I am completely making up my symptoms or at the very least greatly exaggerating my physical pain because no medical explanation can be found, so it must be Fibromyalgia. And since I have suffered from well-documented depression for which I have been hospitalized many times and even undergone ECT for multiple rounds, there is not a doctor on the face of this planet that will prescribe me anything for pain even after painful medical procedures. I am getting to the point where I don't want to go to a doctor appointment for any reason (much less a hospital) like those terminal patients you see in movies who just want to eat good food and lie by the ocean. Oh wait... that's right. I can't even go in the sun anymore without getting a painful and itchy rash.
I saw a rheumatologist last year and the medicine she put me on (an immunosuppressant) caused me to contract HPV even while I am in a monogamous relationship. And that medication also caused me to have skull-splitting headaches and constant nausea and it didn't help me in any way. But... she's the only specialist in my area that takes my insurance so I am scheduled to go back to hear in February for the first time in over a year.
Sorry this is a novel.
Any advice or just a friendly word will be so awesome. Thank you in advance
Lily

 

[sunkacola]

hello Lily,

first of all, welcome to the forum.
Second, do not ever feel you have to apologize for writing a long post. Anyone who doesn't want to read it doesn't have to. Jemima and I will read it, though, and so will many others. We are here to help and to support you and I am very sorry for the troubles you have but am also very glad you found the forum. I hope you stick around because not only can we be potentially helpful to you, but also you will have information to share that can help others and no doubt you will be supportive to others as well. I also want to say thank you for being so open and candid in your post. I hope this forum will be of some help to you in some way.

Many of us including myself understand what you are saying here all too well.
I have had physical therapy and I found that it helped a lot, but only when there was a very specific issue that needed to be resolved. It might help you, but in your situation i don't see how you could get there unless a family member could take you. And I fully understand your being frustrated with being asked all those questions every time! As you say, they have to ask but it still feels awful to us. At times, even though we know it is impersonal, it can even feel demeaning to us. Just being in pain can feel demeaning!

Not all doctors are bad by any means, but the ones who are can ruin the whole experience for people like us so badly that we don't want to go back. We all understand that, too.

About exercise. I think you paid for that walk for 2 days because it was a long walk and it was too much for your system. This is why I always say to people here to start off very small. So, instead of a long walk just go down the road a little way and come back. See how that goes. If that is too much, then walk around your house, inside or out, for 5 minutes and see how that goes. when you reach the level you can do without paying dearly for it, do that every single day. If it continues to be good after a couple of weeks, add just a tiny bit more. And so on. You can build up in that way to get to the level that will really do your body some good without hurting y ou.
And, if that level continues to be only a very small amount, then do that every day and feel good about it because y ou are doing what you can, and that is all anyone can do. I think everyone can move their body daily and greatly benefit from it, but it doesn't have to be a big thing. Even if you just put on music and dance very slowly and gently for 5 minutes...one song...that is good for you.

I want to say that I also suffer from serious depression as do many of us here and we understand that as well. I think it is part of and feeds into the FM, but it is not understood how that all works.

I want to encourage you not to think that it will always be this bad or worse. First, you don't know, so thinking that way is not helpful and may be inaccurate, and second because being pessimistic, even when it is utterly understandable why you would be, is a stress-causing thing and you want to avoid that. There are many things you can do that can help. You have to find out what those are for you.

I made a post on this. Check it out because it has a lot of advice and tips in it. Try out something that seems right to you and see if it helps even just a little. And if you have any questions at all, please ask. I am here to answer them. And vent whenever you want. We all do that here sometimes.

Here is that post. I hope something here helps in some way. We are here for you, Lily.

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

 

[Lily1985]

Thank you!

 

[Jemima]

Hi Lily,

I'm sorry I haven't been around for a bit - everything just got a bit too hectic for me to stay on top of for a while there! But I read your post when you shared it, and also felt really touched by how candid you were. It's never a bad thing to write a lot here - with fibromyalgia (and everything else that each of us may be dealing with) there's a lot of complexity, and usually a lot to say! Venting can be a really valuable way of letting off some pressure - especially when it's to people who understand - so I think it's great.

I'm deeply sorry to hear about everything you're going through. A couple of my closest friends have had really awful battles with endometriosis, so I feel for you hugely on that. Like you, I've struggled with depression all of my life - some 25 years since I was first diagnosed - and then I was diagnosed with fibro a couple of years back, although my symptoms started much earlier. I'm 37 now, and also had moments of "will my life ever get better?", but it has, and I don't feel so adrift anymore! I truly believe that you will find that turning point too. In this area, depression can be a real gremlin - as you know all too well, when we're depressed, it's so much harder to find stable footing and tap into any sense of hope. Whenever I fall into an episode of more extreme depression, I put as much of my energy as I can muster into tackling that first, because I know that I need my brain on board to deal with the rest. Sometimes, that requires a lot of patience and hunkering down, but I always come out the other side. I think that for people like us, our best baseline is something that a lot of people would struggle to handle - with that in mind, we have to remember to give ourselves credit for the strength we've been showing up with over our whole lives. If that doesn't make us warriors, I don't know what would!

I completely understand how dud advice or flippant comments from doctors can feel totally soul-crushing. I think that if you don't feel you're getting anything useful from them, then maybe turn your focus towards the many things you can do for yourself. For me, the biggest resources that allowed me to take control of my life again were getting a handle on my own psychology, and figuring out how to pace and practice self-care in a way that would keep my triggers to a minimum. I had some help from a psychologist, but I don't believe that's necessary to take the same kind of journey.

As I'm sure you've read here on the forum, there is a long list of different supplements that some of us find helpful. I always think that JayCS's advice to tackle symptoms one by one - through trying supplements and lifestyle changes - is a great idea, but I also think that it's really important to get into a mindset of acceptance, where we don't hinge our emotional wellbeing on the things we try working out. It's OK if we don't find a transformative thing that makes a big difference right away, and it's OK if we have bad days, mess up our pacing, or have a flare that lasts a while. Even with setbacks, we can still make progress over time.

On the exercise front, I agree with Sunkacola, and can speak to my own experience too. I've found, since fibro took over my body, that starting anything new has to be done on a tiny scale. Doing a gym workout, going for a long walk, or even doing too much housework can floor me for days if I come at it from nothing. But, no doubt, exercise helps my symptoms a lot. The way through for me was to start walking only 10 minutes a day. I did that for weeks, and then gradually built up my time over months until I could walk around 45 minutes a day - insanely slow progress, but got there in the end! Now, if I don't move as much, I feel my body start to lock up and the pain starting to grow very quickly. So, perhaps consider going back to the drawing board on that one and starting reallllly small. You definitely don't need to travel to some physio clinic miles away to do that - you can just do something simple in your living room!

I had a sun-reactive rash when I was younger that went on for ages. My doctor at the time said it was just pityriasis, but I felt fobbed off because sun is supposed to improve that rather than aggravate it - and they never did any tests. The best I can say to that is to get seriously 1940s glam and rock the pale and interesting look for a while

I really recommend working your way through Sunkacola's list of suggestions - when I first came to this forum, I realised that a lot of her wonderful advice tallied with the things I'd figured out on my own, and that made me feel really comforted that the progress I was making was real, and that I do have power over all of this fibromyalgia b#llo@ks! You could also explore food sensitivities and chemical sensitivities, just by experimenting yourself (once again, no need to pay or go to clinics!) I also suggest taking a moment to really step into yourself, to check how kind you're being to yourself, and to commit to being your own ally. Often, the frustration we feel ends up being something that we unconsciously take out on ourselves, and that can really hold us back.

You can do this. It honestly isn't always going to stay the way it is now - there will be ups and downs, but you will figure out how to ride those and feel more in charge of it. And when we go through struggle, it gives us so much opportunity to learn about ourselves and others, to grow emotionally, and to cultivate empathy. You're already so strong - far stronger than you know - so trust that you can handle what you're going through, and that somewhere in it all, there'll be a gift worth receiving