Hi everyone, I am new hear too and just diagnosed end of December. I am in constant agony and really depressed, trying hard to keep a brave face and be as normal as I can be in front of friends and family and work colleagues then alone I cry. I'm only 44 and desperately sad. I can't come to terms with the fact that I am unable to do even the simplest of things on my own anymore. I have gone from completely independent to relying on anyone and everyone. I was so fed up today I drove to my local Asda as I needed deodorant. I managed to drive, ( I haven't been for over a month as my pain killers make me drowsy) but by the time I walked from car park to door I was in agony, I was determined to go in so I went in and have been in agony ever since. The only time I get any relief is when I sit and don't move and full of medication. I need some help to come to terms with this, I'm still trying to work full time too. Should I be asking for walking sticks or wheelchair? Who decides this? I am housebound otherwise as pain is unbearable. Any help, support or advice welcome. Ps photo only last January, feel a million miles away from then.
am sorry to hear that you have been diagnosed, but not sure if it is with APS or if it is something else?
Your GP should be able to help you regarding crutches or not. Right now for the last two and a half years i have worked full time, but there have been long periods when i could only work part time and others when i was unable to work at all.
Am sure you didn't just suddenly become ill in seconds, there was probably a build up to it. so already you have experience and you can recognise much in your own body and mind.
I am 45 and was diagnosed at 17 and sure, half my life nay have passed but i can gladly tell you that it will and does get easier. Though there are always difficult moments for everyone. Yea, moments that can last weeks or months, or decades!
If you can accept that you have done nothing wrong to provoke being sick it will help alot. Surround yourself with as many friends as you can, though you might find, if you haven't already, some friends just don't want to know. There are many things you will be able to do still when you are not in a flare and many you can do when you are in a flare too. It's a bit of an individual discovery experience.
Hi I was diagnosed at 44 it very hard to learn and understand what u can and can't do. I found it very hard to accept my body was getting weaker. Give your self time rest and talk to friend and family and get them to read up on it they will never understand what u r going through but they can learn , I'm 46 now and still learning you will b amazed how many people around u or bumb into that will have this condition. I have found this site very supportive I'm sure u will find that it is for u good luck , hope to chat again soon
Welcome to the forum and it is wonderful to make your acquaintance. I genuinely hope that you find the forum useful, informative and loads of fun. I am so sorry to read that you are suffering and struggling so much and I sincerely hope that you can find some resolution and relief to this. I have pasted you a link below to our mother site, FibroAction which is loaded with lots of useful Fibro information:
I have personally found that when I got the right combination of medication and physiotherapy that it really helped eased my pain to a manageable level. I sincerely hope that it can do the same for you.
Unfortunately I think coming to terms with this cruel illness can be the hardest part. You need to allow yourself time to do so & to grieve for the life you once had.
I've also found (after 3yrs being diagnosed at age 35) that being open and honest to friends and family about how you're feeling, both physically and emotionally, really helps.
Pacing yourself and your activities is very important to try to get a balance and control the pain and fatigue, as is getting the right balance of medication, so it may be worth speaking to your GP and also asking for a referral to a pain clinic.
with regards to mobility aids, I went and bought myself a walking stick when I temporarily lost the feeling in my leg. I found it relieved some of the pain I get when walking & helped me to walk further distances. My GP is useless, so has not offered any recommendations or assistance, but I understand they're not all like that! The pain clinic later recommended a mobility scooter as I got worse and could no longer drive.
I have been working part time throughout, with periods off sick to recover from flares. Personally I will be stopping work this year on health grounds, but know lots of people manage to continue working if they can get the pacing & meds right.
It is not a case of giving up on life, but learning to adapt! For example, I can no longer run & dance with my child, but with the mobility scooter we can have races & continue to go places together. I can no longer camp in a tent, but we got a cheap caravan with heating & camp that way instead, there are many forms of exercise I can no longer do but have learnt to horse ride sidesaddle and even done some shows, by having to rest more I have rediscovered drawing and painting.
I think my point is, just don't give up. Be kind to yourself and put yourself and your health first (I'm not very good at that). And also know that there are lots of us on here who know just how you feel and are here to help/listen. Gentle hugs X
I'm so sorry to hear you're in such a lot of pain. It takes a long time to come to terms with the the fact that you are now unable to do the things you really enjoy and even the things you need to do like working etc.
I use a walking stick which I bought from a mobility centre that's close to me. Perhaps you could ask your GP about a hydrotherapy referral.
It is a horrible syndrome to live with and come to terms with. There are some good articles on this site providing information that you could print off and give to your immediate family to read, it may be easier for them to rake on board how you are feeling by reading this information. My husband found it it far easier to understand what I was going through when I'd just been diagnosed.
As far as work goes, I've had two major flares recently and I've been off for 3 months with another month to go. I can't see me being able to work a shift. I've got a meeting at work Thursday to do with sickness absence and I'm thinking of applying for ill health retirement.
Would you be able to decrease your hous? Take care of yourself and try and pace yourself through the day. You need to try and take regular breaks at work. Might be a good idea to have a meeting with HR department along with your manager. Have you been referred to a rheumatologist? If you haven't already a referral to the pain clinic.
I'm sorry about this long reply, I do waffle. Good luck with everything. Let us know how you're getting on over the coming months. Becky. Xx
Hi T,
You are still the beautiful and clearly vibrant woman in this photo. That has not changed. I am writing, as the others have, through my own personal experience with FMS-and I know the days can be dark and you feel like you are drowning in a well too hard to climb out of-but, it will become better-your own version. FMS is personal to everyone. At the start it can feel so overwhelming-everyone has given you super advice-but, I just needed to add-that you are still you-not a million miles away-but right in that mirror.
I was also struggling with coming to terms with fibromyalgia and chronic fatigue syndrome and it was suggested that I have a course of CBT. It truly helped me begin to get my head around the fact that life will change but it's not over! Ask your Dr for a referral asap!! Much love....ninja...xxx
Dear All, Thank you for all your replies , it really helps to have your advice and thank you for telling me about yourself and your experiences . Yes I have been diagnosed with fibro and still having tests for RA, but I also suffer with ptsd and depression. I think I must be having a long flare as since last May I have just got worse, I did have steroid injection in September for what they told me was RA, I did get some partial relief for a few weeks but since December pain it has been getting worse and more disabling. I'm really sad to now know how many people are suffering and that you have been for such a long time, my heart goes out to everyone. My photo is of me and my partner of 21 months, I have had a horrible and difficult life but now I have found john and met my soul mate, he is so supportive and until now I felt nothing but disappointment that I couldn't have the life with him that I had only ever been able to dream of but reading everyone's kind replies has made me realise I need to adapt my dreams and not fight the disabilities and To embrace my future and I'm going to use my life's experiences and pain to help and support and make new friends and if that means in or out of a wheelchair that's something I'm going to have to accept. Thank you for suggesting the pain clinic and CBT and I have been buying every book, lotion and potion ha ha to try and get some relief If I find one or anyone wants to know anything about what I have tried just ask and I will let you know, I just don't want to waffle on to you all. best wishes to everyone, thank you all so much, every little bit of advice is helping me on my journey.
Hi , sorry to hear you feel so bad. I don't think people understand that we are not depressed in a way that requires Zonking with anti depressant but that we are depressed due to the effects this horrible fibro has on us. What I do is try to think of something nice to treat myself with at the end of the week. I have had to retire from work at 55 as you cannot fight this thing you just have to except that life will be what it is and keep talking to the people here on health unlocked as you get such a lot of support. I am looking at doing flower arranging and may even try to throw a few pieces of pottery just to show fibre that it cannot have all of my life even if its claimed a lot of it. Hope you get the answers you need xx
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