I've been unwell for what seems like forever. no two doctors can agree as to what is wrong with me. in the past four years i must have seen dozens of everything from general practitioners to specialist consultants and spent a fortune on alternative therapies. nothing really works and i am at my wits end. i simply don't know what to do next and i am becoming frightened that now unlike any point previously i actually look as ill as i feel.
the only confirmed diagnosis that is agreed on by all is that of hypothyroidism and i take levothyroxine for this, just had my dosage upped for the third time.
other than that my symptoms could be read directly from a symptoms list of many autoimmune diseases. i have been told that they think i have everything from colon cancer, nephrotic kidneys to lupus and MS. all eventually ruled out with tests. twice it has been mentioned that have fibromyalgia, or cfs or me and yet other gps say this is not the case. i have tried lyrica, which made me dreadfully ill, i'm on Gabapentin for the neuropathic pain which as far as my pain goes seems to be having a lull.i know i should be at least thankful for this, i take meloxicam which is having no effect what so ever on the inflammation in my joints and muscles .the only drug that has any effect on the pain is dihydrocodeine which makes me sick and good for nothing, it is my last resort for relief.
each time i try a nutritional supplement to help i give myself a flare up. i don't eat wheat at the moment i barely eat at all. which i know isn't helping. i try under pain and tears to exercise, my 20minutes a day to encourage endorphins.
i don't know if i am communicating badly to health processionals and not giving them the right information? i don't know what to do now, are they missing something or am i?
i apologise for my moaning, i know that in many respects i have no right to moan and i am grateful for having life no matter what kind of life it is right now.
any advice here would be so very gratefully received
Please don't give up. I am having some problems with my thoughts tonight so don't want to write anything that may not make sense, but I just wanted to let you know you were being heard and that there are many very intelligent and knowledgeable people on here who can give you a lot of good information, plus you will learn that you are not alone, we all have similar stories to tell.
Lol moaning is aloud here, we all do at sometime or another. You mentioned hypothyroidism, I have this along with Fibromyalgia and depression. The symptoms from hypothyroidism is almost identical as those from fibro so depending on how we look at it we have a double dose. Also it took five doctor visits till I was at the right dose for my Hypothyroid, so hang in there and maybe you can get a little relief soon. If you haven't seen a rhematolagist you may want to. Mine has helped more than my other doctors other than saying to seek help for depression lol, of course I'm depressed I can't do much of what I'm used to and it stinks...Hope I was of some help and hope you start feeling better soon, Gentle Hugs coming your way/
God bless you, dear person. You've had a horrible time of it. It doesn't help that even the doctors don't know what's going on with you. A lot of us have gone through this, plus misdiagnosis.
A question for you: do you have psoriasis or does anyone in your family? What you're describing could also be psoriatic arthritis.
At any rate, fibro can really mess with your life and make you feel completely hopeless at times. It seems to suck the life blood out of us. BUT...you can come here to get support and understanding. We know. We care. You don't need a diagnosis to get comfort here.
Gentle hugs to you. Please take care of yourself, get enough rest and try to find a diet that you can live with. Also, it's good that you've found relief with gabapentin. Some of us just can't find relief with any drug. So that's something in your favor.
I'm sorry you are having an awful time and not getting definite answers. You mention that your thyroid medicine was upped several times. Levothyroxine only gives you T-4 but it doesn't replace T-3. I needed both so I use Armour Thyroid. I hope your doctors did a good comprehensive thyroid test that includes levels of both. It's just a thought. Sometimes it can be one little thing that can throw your whole body off. This link tells you alot about thyroid testing.
I hope you can start feeling better. I know the unknown is often frightening. Try not to imagine that you have some deadly disease, because most of the things we fear never end up happening.
I'm wondering if you could find a Dr. who specializes in fibro, or at least recognizes fibro as a legitimate syndrome. I went thru all the things doing expensive tests which were really unnecessary I thought as some of them where actually reaches for a diagnosis. All turned out negative. Along with a multitude of specialists I also see a pain management dr. After having a severe flare that lasted 10 days. In total frustration I asked her if there was a specialist in dealing with fibro and believed it existed she could refer me to. She looked shocked and said well she
was and rheumatologists were and probably my personal physician. She said the things that treat it was deep, restorative sleep, stretches, yoga like gentle exercises, swim therapy and good nutrition. I am on Lyrica twice a day, 3x during flares. summer time when I have unlimited access to the pool at my apartment does seem to help, she gives me a muscle relaxer to take 30 min before bed. But my nutrition is very poor as I don't feel hungry more than twice a day and then it's usually for something like fresh fruit only so I have bought whey protein as a supplement and make a fruit smoothy. So often fibro, goes hand in hand with other diseases, I have long term chronic depression, and chronic fatigue syndrome. I don't know if any of this is helpful, but do hope, even if it was only one sentence, there is something in here worth reading.
I would like to say thank you, a very big thank you to all of you who have responded to my selfish moaning. i will use the information that you have all given to me and your kindness has already helped me more than you can imagine.
I am sorry for what you are gong through. I type this as tears stream down my face. Today was so, so bad and I am so tired. This is a very cruel disease- I feel better and get my hopes up only to crash. I need help, I need someone to make better. Prayers please.
I’m so sorry to hear you are so unwell, if I had a magic wand I would send it to you in a heartbeat. The people on this site are amazing and know a great deal about how we feel. Post a discussion and see what happens?
Please feel better xx
Hang in there, MBP. Get some sleep. Rest. Forget about the stresses of the world for a while. You sound like you had too much on your plate. Please just rest and think about it again when you're a little more refreshed.
please dont feel like u r selfish in anyway. many of us on here vent to each other cause no one else really knows how we feel. sometimes it helps to just let it all out.
i wish u could find a dr to help and not just run test and tell u that they dont know how to help. i know one thing u can do is b 4 u go to your next appt. make a list of all the problems u r experiencing. also try to also list all the test u have been through and the results. drs only have so much time with each patient so having a list will help. u may not get to everything on the list on one visit so try to list the things that bother u the most at the top and go from there.
i think that with everything u r going through u may not b giving the drs all the information they need and its not your fault. tring to remember things to tell your dr can b very hard at times. if u r in alot of pain it can b even harder to remember what u needs to tell them. my prayers r with u.
Thank you all for your kind thoughts. I got about 6 hours of uninterrupted sleep last night and I feel somewhat better. I just get so tired of suffering what seems to be new losses every day. I have been avoiding people I know because I get tired of the pitying looks and the fussing. I ask them not to fuss and I know people mean well but I just want to be NORMAL! It is what it is though and I am doing my best to live with it and manage it well.
Sorry for moaning. I try to be upbeat and smile but some days I just can’t.
Writing things down is a great idea and I do that all the time. But, you are right- the doc never seems to have enough time to listen and they sure don’t read what I have written. It is very frustrating and I tend to give up before I get to the end of the list. When I pushed one neurologist for answers, he got angry with me and won’t see me anymore. He says that he can’t help me. So very tired of hearing that! Docs don’t like when you ask too many questions. I think they think that you are questioning their intelligence or something. And, of course, they are doctors so they know it all. LOL
What are your symptoms? If it is fibro, you should be on savella or cymbalta. For three years I would ask myself every day “what is wrong with me?” I felt like I was dying slowly and when I died they would do an autopsy & find some crazy illness that killed me. Then I started savella, and started talking to people with fibro, acceptance was the hardest part, and the savella made me stronger emotionally and mentally, it gives me energy and gets me through the day. I take 1/2 pill mid morning, the other half around 1, and another half dinner time , you have to find what dose works for you, but for me I couldn’t get through the day with out it. I don’t ask myself anymore what’s wrong with me, ( although some days I am still shocked at how horrible I feel ) but I am learning how to live with this dreadful fibro. Now when I look at pictures of myself I say wow that’s when I felt good, and I feel sad that, that vibrant women is gone, it’s all about learning how 2 make the most of it. I believe I also have chronic fatigue, it’s a lot more than just being tired, I get chills, and flu like symptoms sometimes for no reason, it helps to have a dr that understands fibro- You are not alone
Dee, I know what you mean about being sad that the woman you were is gone. I look in the mirror and I see an old woman. I just turned 48 but never looked my age before- now I look older than I am. If I didn’t color my hair… Don’t even want to think about how old the gray would make me look. I am out of shape, fat and just blah.
I tried Cymbalta for a while and it didn’t help. I have not heard of savella and I am writing that on my list of questions for the doc. My rheumy diagnosed me with fibro but he doesn’t “believe” in fibro according to my PCP. My only other option for a rheumy is at least 1 1/2 hours away and I am looking into that.
I am so glad to have found this site. I am so, so tired and have a headache today but mood is pretty good. It helps that I saw my therapist this morning and I could talk unrestricted. It’s just a shame that I have to pay someone to listen to me- really listen, that is. I am glad to know that there are others out there like me and that I am not alone, even though I sure feel like it sometimes.
Oh my! I had his clone! So I dumped him after the first visit. Found one who is far more amenable to listening to what I have to say.
After that experience, what I did was find rheumies on my insurance and then went and looked at how people rated them. I found one who rated highly, including on listening skills and tried him. Am very satisfied so far. I suggest you try this approach. Think of it like shopping for the freshest veggies - you purchased a rotten one last time and this time you're going to make sure you get the freshest one possible.
Chat soon,