Here we go again

[Catlenever]

Hello, I have officially had fibromyalgia since swine flu in 2009, dxed several times though I was a non believer thinking no, it must be some horrific fatal disease for all the pain I was in so I kept searching. Bed bound for months at a time. Finally a neurologist at Cleveland Clinic said look, you are ill with something that you are going to have for the rest of your life, and you have to learn to live with it. He gave me the dx of fibro and me/cfs and that was that. Oh and I have an extremely unsupportive family. My ex doesn’t even acknowledge the fact that I have it. Once we found out I “wasn’t really sick” he was done. We aren’t together anymore so that’s alright I guess but it rubbed off on all the adult kids. I have developed really severe anxiety over the years, which of course plays into developing into some beautiful flares, sometimes one right after another and it seems there’s just no end in sight. Because of my anxiety I don’t go out much, I don’t socialize, this is my first post ever. I just had some major stress, I was supposed to take a trip to see my daughter and granddaughters in Florida (I’m in NY) and it’s a 2 day trip by car. I don’t fly. My ex was driving us. Just outside the city I started panicking, though I thought maybe carsickness, and about an hour down the road it was intolerable and I knew I wouldn’t be able to handle the trip. We turned around and he took me home. I knew “it” was coming… so that was yesterday. Tonight my muscles are screaming, my costochondritis is starting- that just makes me cry, the fatigue is crushing, I’m hot and itchy and hivey and my cat is all over me loving me because she knows. The cat’s love does not make up for missing my grands hugs and kisses, FaceTime doesn’t do it justice. Anyway there’s a lot more and I hope this flare doesn’t last long. Thank you for listening, sorry for complaining. I hope you all are feeling well. Peace and love to all.

 

[sunkacola]

Hi @Catlenever .......I think you should be proud of yourself for posting for the first time on the forum. And I hope we can be of some help to you.
I also think you can take a lot of credit for the fact that you even tried to go to visit someone that far away! So, it didn't work this time....maybe next time it will. Maybe you can meet them half way and it will be a shorter trip, who knows. But you tried and that counts!

My best advice is to think about getting a therapist ...if you can manage that financially and emotionally and practically. If you can't go anywhere to see one, lots of them do sessions online these days and you could be at home. I am thinking that maybe someone could help with techniques to manage the anxiety, because to me from what you say that sounds like a huge problem for you if it is exacerbating your pain and other symptoms, the way stress will.

Or, if therapy is just really not your thing at all, have you talked to your doctor about possibly trying an anti-anxiety medication?

These are just thoughts.....might not be helpful to you.
Don't apologize for complaining.........that is part of what this forum is for! We are here to support you and to try to help if we can.

 

[Catlenever]

Thank you so much for your response sunkacola. I appreciate all your insight, and in regard to that, I do have a therapist that I see weekly and have faithfully for more than and a year and a half now, mostly virtual, and along with her I see a psychiatrist who handles the meds etc. We sit down for a good talk every couple months, AND YOU sound like my psychiatrist because all the anxiety worsens the fibro he says, in a nutshell- (I’ll send you the fee) and we do any changes or additions or subtractions and he gives me any wisdom he thinks necessary. I’m on antidepressants and anxiolytics, though I hate taking the latter for fear I’ll get hooked. Only taken sparingly. I’ve been on gabapentin and topiramate since 2009/2010. I take methocarbamol, and magnesium. I’m on other meds too for other things. ( I consider myself healthy lol). There’s much I can’t take because of liver and chronic kidney disease but my kids mentioned cbg and I talked to my counselor about it today. She said some people it helps- some not. I’m willing to give it a shot. Anyone else use it out there with any luck? My rheumatologist discussed having me get with pain management last time I was there, as the pain seems to be getting more and more intolerable for some reason (age?) so we shall see what happens there. I’m a retired (see disabled now) nurse, so I’m familiar with a lot but I feel completely stumped by my own illness and experience with this. Wonder if any other med professionals feel this way. Thanks again Sunkacola. And for the welcome!

 

[BlueBells]

Hi @Catlenever

Welcome to the forums.

You'll find others with all sorts of issues, and a lot will know exactly what you are dealing with, and just knowing others truly understand, because they have the same issues, that alone is so supportive and relieving of stress.

It's fine to complain here, there is even a forum especially for those threads

Also, it seems quite common, sadly, for people to not take us seriously, after all, it's pretty hard for us to figure sometimes, so I guess it's pretty crazy to them too. Not until my ex got polymyalgia did he have any comprehension of what I have, but as he's improving, I think he's also losing the understanding

Do interact on here, that's where the support is really felt.

 

[Catlenever]

Thank you Bluebells. It is nice to be in like company - in that we all know how we’re feeling- though it makes me sad that others feel like this and worse. So sorry it took that for your ex to understand and glad he’s improving. I don’t wish the same for my family, perhaps though, a gentle lightening bolt of awakening? I’m glad I found this group to give me an outlet and hopefully lend a bit of support to another if I can. Some of you are so wise - the other one I spoke to on here sounds just like my psychiatrist (ie wise) and I will certainly send my hourly fee to. Anyway, thanks thanks and more thanks. I hope you’re feeling well today.

 

[Mickey]

Hi catlemever I have travel anxiety as well! When I know I’m going on a trip my dr prescribes be a couple of Ativan and it helps me tremendously! I went and my very first plane trip last year and I just turned 50! I had my Ativan in my pocket and just having them eased my mind so I didn’t even need them!! I hope this helps you!!

 

[Catlenever]

thanks Mickey! Yeah I have lorazepam and did take it, didn’t seem to help at that time. Probably because it was such a long trip-2 days on the road- I don’t know. At other times it helps. Glad it works for you. How did the plane trip go, did you take it before, during? How did you manage it, if you don’t mind sharing. Thank you!

 

[Catlenever]

I responded to you with a long response Sunkacola, but it says it is awaiting moderator approval. Not sure what that means.

 

[sunkacola]

I responded to you with a long response Sunkacola, but it says it is awaiting moderator approval. Not sure what that means.

Doesn't necessarily mean anything, and I just saw it in the queue and approved it.

My understanding of anti-anxiety meds is pretty limited, but I do know that anti-depressants don't tend to work if only taken sporadically, so you might want to talk with your doctor about that if you are having depression.

If you don't want to take anti-anxiety drugs, you would probably benefit from learning other ways to reduce that. Look online...there are hundreds of techniques. Try a lot of them and find something that helps.

As for CBG, CBD, or the other compounds of that kind, this may help you or may not, because it seems to be different for everyone, but since you live in NY and cannabis is legal there, give it a try! The thing to do is make sure you are going to a registered, totally above-board dispensary, and then talk to the person behind the counter and tell them a little about yourself and what you need it for, and trust that person to be knowledgeable enough to sell you the right thing.

I use several different varieties medical cannabis, CBD, CBG, etc. fairly regularly and recommend it for those who can get it legally.

 

[BlueBells]

Hi @Catlenever and @Mickey

So good to see you both here

A couple of things I learnt here, when answering someone and wanting them to see the post, put the @ symbol before their name, as you can see above. This brings an alert to that person on the off chance they may miss your post.

Also, hitting the "enter" key will break the post into paragraphs, too. Some of us have difficulty when there is a large 'block' of writing, and either can take several attempts to get through it, or just skip through, or just leave it altogether.

That isn't good, as the poster is not being 'heard', and the reader is missing things they may well be keen to respond to.

I have found these forums incredible, I have learnt that I'm not alone, that I'm not just imagining everything, and that finding non-sufferers lack comprehension......that's just the way it is, and it has "normalised' so much and that leads me to just take it as it comes to a fair degree and not belt myself up over what is simply fibro.

Although I am, at times moreso than others, dragonised by the little fibro gremlins, I'm starting to learn to dance with them, as someone described it.

Take care, enjoy the forums

 

[sunkacola]

I'm another one who has trouble ploughing through large blocks of text. Creating lots of small paragraphs is very helpful for many of us to be able to read posts easily.

 

[Catlenever]

I’m so sorry @sunkacola and others, I will be better at posting. Thanks for making me aware.

 

[BlueBells]

@Catlenever

Please don't apologise. If someone hadn't mentioned it, you might miss out on some good interactions on here

Neither myself nor @sunkacola meant it critically at all. We all get enough hassle from those who do not comprehend fibro. We are not about to bother each other with picking on people in the forums. It's supportive and welcoming in here. We all need that safety net.

 

[marymi]

@Catlenever Hi I have had FM FOR 56 years. I have come to conclusion that I treat the whole of the symptoms separately. I read your post and was immediately fraught by it. I am glad you've been learning not to apologise my dear as we have all done that on bad days but we are all happy to try to help and have enormous empathy. I have tried EVERYTHING and learnt a lot. Managed to have two children, single mum, worked full-time. Not bragging but when I look back I don't know how I did it. I google a lot and have a good GP and find, usually, I can fix my problems with the terrible symptoms. I am now retired still dealing with it but sometimes it's rough. I have the eleven symptoms and treat them separately! My house is equivalent to a Pharmacy. I kid you not! When the pain is unbearable I take the med that works for me. We are all sooo different. I hope I have helped you in any way. Keep trying. Sending soft hugs.

 

[mand1965]

Bless sending hugs im the same ..no social life at all and a husband that doesnt give a hoot .kids dont understand either just makes me so frustrated and sad .i do believe im getting worse and have other health conditions too feelling really down with it all