New and needing advice x

Hi all, I new here and was needing some help/advice. I was diagnosed with fibromyalgia nearly seven years ago. Since then I have been progressively getting worse and developing symptoms that don’t go with my diagnosis, I.e pain in my eyes facial numbness, hands swelling and extremely painful. When I was diagnosed I did a lot of research in to the condition in order to help myself, the main consensus is that fibro is not progressive (I do understand that there still isn’t really a lot known about the condition) I was originally diagnosed by a rheumatologist, I have had one MRI of my head about 12-18 months ago and was told it was clear, but they only thing they actively tried to rule out was arthritis, which they did. I will be honest, I’m not sure where my ramblings are going! I know fibro symptoms are very similar to ms symptoms, and for the last six seven months, it keeps nagging at me that fibro isn’t progressive, but I’m getting worse, but my docs just keep adjusting my tablets to no effect, I’m still in a lot of pain, I feel like I’ve been run over by a truck from morn to night, I can barely stay awake and I feel I am letting down my amazing husband and three gorgeous children as I can’t seem to do the things I used to do. I am 31 years old, and lately I feel as though I’m just waiting for it all to be over. I do suffer from depression as well, and I wish I could say I’m just having a depressive episode but it feels so different. Thanks for your time. K x

Hi K,

One thing to realise your husband and children will be far; far worse off if you do anything silly.

You see MS is completely unknown; no cause or cure. So you must be put in some box and your doctor has chosen Fibro as it probably fitted the criteria at that time.

I suggest you go see a Neurologist specialising in MS; perhaps someone on here can recommend one in your area; cost about £200. All further treatment on the NHS; otherwise gets expensive.

Ask to have a full MRI; brain and spine and depending on their view have a short course of steroids that may stop the pain or recommend some other pain relief.

Good luck; 2013 will be brilliant.

Thanks for your reply, I’m on so much medication at the moment I rattle!! I’ve just moved, will be sorting put changing my docs tomorrow, thinking I should go in there on first appointment and just hit them with everything!! I have written down all my symptoms and if I listed them all I worried the new doctor will think I’m either making it all up or being. Hypochondriac although that maybe my own fault as I gave up going to see my old doctors as they just didn’t seem to want to listen to me. To top it all of I’ve had a water infection for two months and still can’t seem to shake it. Sorry if it seems I am moaning (I prob am!) am just very tired and don’t think I can continue to fight anymore to get my docs to listen. Kx

Hey, U deserve to moan, as u call it! Life can b hard with un explained things going on. Don’t feel alone and use getting the doctor to sort u out as a big focus. Don’t give in, u only live once 2013 - New start to get sorted out, even if its just the right medication for u. Love Claire xx

Thanks Claire, Sorry haven’t replied to you straight away, eyes are aching (would like to add, not a fibro symptom!! Lol) I am going back to my docs, had orders from mother! Lol I hate feeling like I’m moaning as I know there are people out there much worse then I am. K xx

Hi Kiki, and welcome to the site :slight_smile: I may be a bit late, but if not, I recommend that you don’t hit the GP with too long a list of symptoms. Maybe focus on the fact that you were diagnosed some time ago, but that your symptoms have been progressing so you have lost confidence in the diagnosis - can they help? Please keep an open mind too - there are a whole host of things that can cause neurological symptoms, some of which are relatively easy to treat, eg vitamin deficiencies. Good luck with the GP. Karen x

Hi Karen, No your not too late! Couldn’t get outta bed this morning so haven’t had a chance to get to the docs. I do understand that it could be anything, a few months ago I did have some blood tests and all very fine I. Regards to vitamin deficiencies etc. What you say about losing confidence in the diagnosis does make sense, I’m just getting cheesed off at battling all the time to get answers, as I’m know a lot of people on here are. Unfortunately I just don’t seem to have the energy to do it for myself, I seem to keep the fight for my son who is on the autistic spectrum, to get everything he need, and before anyone says it, I know I have to try and keep myself healthy in order to help him. (Lol) it’s just all too much at the moment. Sorry I know it’s seems I’m being '‘oh woe is me’! Don’t mean to sound this way. Thanks for all your advice, it’s so nice to actually talk to people who know exactly how I’m feeling. Kxx

Hi, Just want to let everyone know that I have spoken to my doc and he wants me to have a load of comprehensive (?) blood tests tomorrow, he did say the symptoms I am experiencing are not consist with fibromyalgia, and asked if anything else had been looked into. I did tell him that I know fibro is progressive but that I have been getting worse since I was diagnosed. Thanks to everyone who replied, it gives me hope now that I will get answer, regardless of what it is. Kxx

Sorry that meant to say that fibro is not progressive.

It’s a sad fact of life that it’s the people who ask who tend to get. The medical profession tend to assume that everything is fine unless the patient says otherwise so learning to speak up, and to do it in a way that makes medics actually DO something, is really worthwhile. It can be tiring, frustrating and difficult, but if we don’t act as our own champion, no one else generally will :frowning: I hope tomorrow is a better day for you - and that you find the strength to fight for yourself, and not just for your son’s sake. Kx

Hi K My sis in law has been dx with fibro and I was dx with ms in June. She has also has swelling in ankles and hands and has had an additional dx of lymphodema. I think it important to remember that we can be unlucky enough to get dx with more than one thing so do definitely check any changes in health out with your GP. Fibro as with ms can be difficult to diagnose. There have also probably been advances in being able to diagnose both conditions in seven years. If you feel things no longer fit with original dx talk it through with your GP. Please be kind to yourself. I know depression can accompany fibro and it can be difficult to find positives when you are in so much pain. I know they still can’t get my sis in laws medication right, and lack of good quality sleep just aggregates things further. This is a great site to get support (although been a bit quite on here lately) someone will always be there to support you. Hoping you get some answers soon. Mish x