Need to vent about...everything

[Heavenjumper]

I have been handling my fibromyalgia diagnosis for about 3 months, along with the degenerative disc disease diagnosis that I received at the same time, pretty well. In September, I suddenly lost use of my left leg for unknown reasons. The best guess anyone gave for this happening was a nerve related to the disc disease in my back. I have regained most of the function in my leg, but I still have a lot of weakness and pain if I'm up for too long. I haven't been able to go back to work because I can't be on my feet for more than an hour without getting weak, being in severe pain, and needing to rest. I walk with a cane if I leave my house. My house doesn't stay nearly as clean as I'm used to it being because I'm just not capable of doing that much anymore. My neurologist has me on a medication to help with my migraines, but they still hit about once a week. However, he is not actively treating me for the fibromyalgia that he diagnosed me with. I will be 34 years old next month and have always been very active. I have a 13 year old daughter that lives with me and an 8 year old son that lives with his dad. My boyfriend lives with me and is wonderfully supportive and understanding and helpful with as much as he can, including covering all bills and expenses with his single income since I can't work.

All that being said, I feel like I'm going insane with all that's going on. My daughter has had behavior issues for the majority of this year, which has caused me a ton of stress, but she seems to be finally settling down and getting into a better behavior pattern(hopefully it continues). In the last couple of weeks, she has started seeing just how much pain I deal with and how little I can really do consistently and she has started wanting to help. I don't want to ask her to do too much, though. My mother had Rheumatoid Arthritis when I was growing up and I know how hard it can be for a child growing up with a parent that needs a lot of help so I don't want to risk her acting out again because she feels like she's having to do too much. My boyfriend works a full time job with evening hours, goes with me to run any errands or go to appointments or whatever I need to do before he goes to work, and helps around the house when/where he can. He hates seeing me in pain and when I push myself to get things done, he's the first one to tell me sit down and rest while he does whatever it is. I couldn't ask for a better man to love me, honestly. However, on occasion, he gets into this quiet mood and I can tell something is bothering him. When I finally get him to talk about it, he says he's just stressing and part of that stress is worrying about me. I hate knowing that I cause him so much stress and worry because of my pain. Aside from that, my best friend needed a fresh start and moved in with us right before my diagnosis. Her being here has actually been really helpful with an extra set of hands to help at times, but she also worries about me. She doesn't understand the details of my health issues other than I can't do as much as I used to and I'm in pain, but she keeps comparing my pain to another friend of hers with back problems. I can't seem to get her to understand that my pain goes beyond that, that back problems and migraines aren't my only pain issues. She does the dishes every now and then, but I could really use her help a little more than just that but at the same time, I don't want her to feel like I'm trying to take advantage of her being here either.

Aside from everything at home, my doctors and the medical side of things is causing a stress all its own. Not being able to go back to work and having no improvement for over a month, I'm looking at filing for disability. I know my best bet for that is to have all of my medical info in order before I actually file though, so that's what I'm trying to do as well as getting treatment that will help. My neurologist diagnosed me back in August, but has not actually treated the fibro at all other than trying to alleviate the migraines. When my leg went out, I went to my primary doctor's office and saw one of his associates, who blew off my loss of function entirely. It pissed me off severely, and I wanted to let him know about it. I went to him this week to get a referral to a rheumatologist for treatment of the fibromyalgia. I let him know how his associate treated me and he also blew it off, didn't offer an apology or anything! Then, as if I wasn't upset enough about that, he refused to give me a referral to a rheumatologist telling me that a rheumatologist won't see me without a rheumatological disorder like RA or lupus, that they wouldn't see me for fibromyalgia! I was floored, I couldn't even say anything! Needless to say, I'm changing doctors and going to someone else. But I just can't believe all the crap I'm dealing with to get my medical needs taken care of.

If I don't have enough stress from all the stuff I've already mentioned, I still have the problem of my own mind being my worst enemy. I hate not being able to go to work, not being able to do things around the house, not even being able to take a shower without someone being nearby in case my leg gives out and I fall(which has almost happened a few times). I want to cook some of my favorite recipes for dinner, but they take standing for an hour or more so I put them off. I am so used to being independent that not being able to do things for myself is driving me up the wall! I get bored and want to do things around the house, then I move and realize that getting out of bed and taking the dog outside will cause enough pain and wear me down enough that I'll need to rest again before I can think about doing anything else, then I lose all motivation to get anything done since I won't get everything done. I've been fighting it, but depression is starting to set in and I don't know how to stop it because of my limitations. I just feel completely useless lately, I need to find a way to fix some of this!

 

[diamond]

I want to do a long reply as i understand all you are saying. Unfortunately i am in too much pain right now to type all i want to but can at least say is we all understand the frustration and emotions all round on top of the pain you are dealing with.

The very first thing is to find a doctor who believes and supports you with fibro who will also refer you to a rheumy who also believes in Fibro. I dont live in the US and finding good doctors who dont roll their eyes at us is a problem we all face and just adds to our stress.

Loosing our independence and not acheiving the things we long to and also wanting to care for the people we love in the ways we want to even if its only cooking a nice meal is also frustrating and makes us feel useless.

Don't give up...maybe do try and do a little ..even if you have to sit down in between. I bet your lovely boyfriend would appreciate one of your recipes loads and that can be your motivation.

Depression is pretty natural when life becomes so restricted. Some people benefit from talking therapies or medication and you also need a good doctor to help you explore these as possibilities.

Low doses of anti depressants are also used to manage pain...so i really hope you can find a new doctor to help with the whole range of problems you face....dont beat yourself up this is a brutal illness...you are doing well to keep yor head above water and you sound so very kind and thoughtful about your friend and boyfriend and those in my view are exremely valuable and attractive charachter triats and is why you have attracted such a caring partner!

I will write more later...take care

 

[Heavenjumper]

Thank you willow. I understand the pain making a longer response impossible, it took me taking a few breaks to type all that I did as well. I do try to do some most of the time. The weather has started turning cold quickly here, so the last week has been full of more bad days where I can hardly do at all than good ones, especially with no heat in the house. I am blessed in having such caring people around me, it's just hard to adapt to the necessary changes I have to make. This forum has been a great help in coping for me as well. Thank you again for the kind supportive words.

 

[Hope4all]

You sound so much like me! I'm so sorry you had a bad doctor. Don't waste your time with those types. Ask around who's good and try them. I wanted to tell you to check your school's written policy on becoming ill or being disabled. The profs may be required to adjust for you. If what you need is to rest and not do school right now, the school might give you a refund if you are sick. One of mine offered a refund and two school's I went to had to adjust for my disability. I managed to avoid depression until I applied for disability. I wanted us to be independent but my husband was struggling to provide for all 6 of us. It may take a long time. I am appealing mine for the second time and I wish I had checked the success rate of my lawyer before I chose him. If you need disability income, I also wish I had gone to the doctor every single time I was sick so my documentation for the judge was more of a true reflection of my pain and tremor and fatigue. I wish you the best as you try to handle this. Having an actual fibromyalgia exam might help. I think 11 of the points need to be painful. That would tell you for sure if a new doctor believes in it without starting off questioning their belief. I agree with the person above that you have to be assertive. You are paying them, so they need to be effective.

 

[Heavenjumper]

I have a family member who was diagnosed with fibro back in the 90's and she dealt with several doctors over the years dismissing her issues, so I expect to deal with a bad doctor now and then. That doesn't make it any less frustrating, but at least it's not a shock in addition. I found a primary doctor that has great reviews, so I'm going to try him and hopefully have better luck. I have already gotten a couple of referrals for rheumatologists that are pretty good from some people I know, so once I get a good primary doc I should be pretty safe for avoiding the crap doctors, I hope. I had actually already stopped school before now due to lack of financial aid, but did have to stop working recently, which hit me hard. I held out hope for a month of going back to work, but it doesn't look like that's going to be a feasible option anytime soon, which is what made me start looking at disability. I would prefer working and staying independent as well, but my boyfriend is covering all the bills and expenses on his income right now and things are really tight. I'm trying to do it smart though and get all the medical stuff in order before I apply so that maybe it won't take as long, but I expect it to take a while anyway. Fortunately for disability purposes, I also have a diagnosis for carpal tunnel and degenerative disc disease so the additional problems will only help my case. I definitely want to get as much documentation as I can though to help it.

 

[Janette Holzer]

I understand your need to vent. Unlike you I had a good public doctor who put me onto a rheumotologist. That was lucky, however I too have had to give up work and have had to move in with my parents and 15 yr old son. Financially doing it tough. I can relate very well to your feelings of frustration. Even if I can work again I have no idea what to do as I cannot return to my old job. I am also going for disability and have put in the form. Took along time and additional expense to collect all information I needed to submit. I put the forms in October last year and am still waiting for an assessment. I am told the process can take up to 2 yrs .My ex partner and his new wife think I am putting this on and am just lazy. He no longer helps with caring for our son so I have that stress all on my own.I like you have no independence and am reliant on my ageing parents for help. I have been able to cook dinners but am finding as the months go by it is getting more difficult. I find breaking it down into small tasks and sitting in between helps. I keep the meals simple and nutritious. No more hours of standing to cook. It's impossible. I find the flare ups are the worse times and my son who has needs is not always understanding. However as he matures he is becoming more so as he sees how the condition affects my day to day life. Thank you for your thread.I could really relate and felt an understanding of exactly what I am experiencing.