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What happens now?

Posted , 5 users are following.

Ellenoscar
Ellenoscar

Last week I was diagnosed with Fibromyalgia, I was pretty sure it was coming but it's still hit me like a tonne of bricks. I have suffered with sever anxiety and depression over the past year and I since my diagnosis I have felt extremely low. I'm 23 years old, I don't know what my future will be like living with fibromyalgia, does it worsen with age? And what happens now? I have been told about a 'pain management' course but I have no idea what that entails. To be honest I am just feeling hopeless right now and unsure of what to do, where to go, if there's any support groups/ forums I can visit. I would be extremely grateful of any information, or even just someone to chat to that has gone through the same thing. 

Thank you for your time. 

0 likes, 9 replies

9 Replies

  • Snapdragon0720
    Snapdragon0720 Ellenoscar

    Posted

    Hi Ellenoscar, I'm so sorry you're going through this. Your situation sounds exactly like mine, except that I haven't been officially diagnosed. I'm 23 as well and I've been dealing with unbearable headaches, back pain, shaking, and tingling in my feet, hands, and face. On top of it, I've dealt with anxiety and depression as well. I'm sorry I can't give any advise on how to manage the pain; I'm struggling with that myself. What I can tell you is that you're not alone. When I started going through this, I felt like no one around me believed me. After 2 hospital visits and countless doctors visits, all I would get were prescriptions for headache medication that didn't even help. Fortunately, I have found support in my family and friends. Though the physical pain doesn't get better from talking about it, the mental and emotional pain does. I'm here if you ever need to chat, and there are plenty of places - online or in person - that you can go to to talk to someone. I'm sorry I can't give any helpful advise, I just wanted you to know that, even when it feels like it, you are not alone. Just remember that. And maybe talk to your doctor about different ways to manage pain, whether it's a medication or exercise or something else. I hope things start looking up for you soon. I'm here to talk if you need someone to talk to! smile

    -Anna

    • Ellenoscar
      Ellenoscar Snapdragon0720

      Posted

      Hi Anna 

      Thank you for your reply, it's nice to know there is someone my age that is going through the same thing! I am so glad to hear you have the support of your friends and family, without mine I'm not sure what I would do. Although you might feel like you haven't given me any helpful advice, it lifted my spirits to read your message so thank you! 

      One of the things I'm struggling with, is I don't feel like I get to do things that other people our age get to do, how do you deal with this if you feel the same? 

      Thanks again - Ellen 😊

    • Snapdragon0720
      Snapdragon0720 Ellenoscar

      Posted

      I know exactly what you mean! This first started in the summer when I had all of these exciting trips planned. Unfortunately I had to put boundaries in place for myself. I couldn't ride any exiting rides at a theme park, I tried to stay away from any alcoholic drinks, I couldn't even help with an 8 hour drive!

      I'm also still in school, working on a music degree with a minor in theatre. My focus is vocal music, and sometimes my body just doesn't have all the energy I need to sing properly. Not to mention my memorizing skills are not great when I have this headache.

      I'm not really sure how I deal with it more than just letting the people around me know what's going on. I do have one professor that I think thinks I'm faking it to get out of doing things. Its not helpful when you don't look sick on the outside. I think when you can figure out how to manage the pain and maybe put a few boundaries up, life will feel a bit easier. It's tough.

      Not sure if this helps, but I hope it does smile

      -Anna

  • Magpie2me
    Magpie2me Ellenoscar

    Posted

    Hi Ellen. There is really no particular age group for this condition. It can affect anyone. It is a positive thing that you got a proper diagnosis since now you don’t have to wonder; do I or don’t I. So now that you know what you are dealing with, you can learn to manage and apply what can work for your particular situation. One important thing I can suggest Ellen, is that you try to accept that you have this condition. Acceptance is a big factor in dealing with it. Denial only makes things worse because if we doubt we have this, then we cannot recognise symptoms and when we need to adapt to ups and downs. Stress tends to feed Fibromyalgia since we are more tense and feel exhausted. So managing your stress and anxiety is a key. So I would also recommend you writing out in a journal all your concerns and worries. If there is any anger issues at the moment, no doubt many justified, I would also write down these feelings or even better, write a letter stating these complaints and feelings, without necessarily sending it to the person involved. You could never imagine what a relief this can be. Not only to your nervous system but there will be some physical relief as well. We often stuff down our emotions instead of allowing ourselves to feel them even in their intensity, and getting those emotions out on paper or typing them out on the computer. Anxiety is caused mainly by our thinking process. You cannot have an emotion without a thought Ellen. So getting to the bottom of your thinking will help you tremendously with your anxiety. We think by ‘controlling’ our emotions and feelings, that we can relieve the anxiety. But I have learnt that you cannot control your emotions only through will power. We must face them full on along with all the often irrational thoughts that go with them. Then we can truly experience relief. As for your pain, I cannot advise regarding medication because I have for over 30 years, approached my Fibromyalgia in a more Holistic manner. So healthy diet, mild exercise like short walks, vitamin supplements along with anti inflammatory foods such as ginger, curcumin, etc. I take Epsom Salts baths when in a flare up of pain and natural magnesium cream rubbed into the area. Also recognise your limitations Ellen. Learn to rest and recoup on more difficult days. Treat yourself as you would a best friend. You deserve it! Warm hugs! Maggie 
    • Ellenoscar
      Ellenoscar Magpie2me

      Posted

      Hi Maggie, 

      Thank you so much for taking the time to reply, I will definitely take everything you have said on board. I am also interested in more natural remedies, I don't like the thought of being stocked up on medication all the time so thank you for some new ideas to try. Is there a particular forum or something that talks about holistic healing? 

      Thanks again - Ellen 😊

    • Magpie2me
      Magpie2me Ellenoscar

      Posted

      Just a basic healthy lifestyle with lots of veggies, some fruit and lean meats will be beneficial. I only take a few supplements as well. I find omega 3’s are good for inflammation which often accompanies FM. Googling about the condition, you may find some very good advice on nutrition and supplements to help with the pain. I will email you another helpful supplement that has made a marked improvement in my mobility. They might delete the suggestion. Maggie 
  • Oompa
    Oompa Ellenoscar

    Posted

    Hi Ellen, sorry to hear you have this condition sadly fibromyalgia doesn't discriminate, and I have gone and still going through what you are, but there is light at the end of the tunnel, to have supportive family and friends is a good start. In terms of pain management mystery process was saw a specialist who referred me to physio who tried acupuncture, had about 6 months of this, several changes in meds, injections in my back, thighs and generally the spine, back to physio who got me to see a shrink this was all before my diagnosis, I even paid to see a chiropractor, bath salts, massages, yoga,numerous hospital visits and tests. I've now started mindfulness sessions and looking at my job situation, I will not let fibromyalgia beat me, don't give up is my advice, keep talking to people I find that helps with the anxiety. Sending hugs.

    • Ellenoscar
      Ellenoscar Oompa

      Posted

      Hi there, thank you so much for your lovely reply, despite all you have been through you still seem so positive and that gives me some hope for my own situation. 

      I am curious to know, of everything you have tried what things have been through the NHS and what have you funded yourself, I hope you don't mind me asking. I have been out of work for around three months now and money is extremely tight. There are many things I want to try but through the research I have done they seem extremely expensive! So I'm unsure as to what is worth spending my limited money on etc. And what help I can ask for from my doctor. 

      Thanks again - Ellen 😊

    • Oompa
      Oompa Ellenoscar

      Posted

      Ellen believe you me it has not been easy nearly a year since I was diagnosed and my issue was the acceptance, I started feeling depressed, and frankly wanted to end things until I came across this site. I'm still not 100% but have some relief that there are people I can talk to. I'll be honest I spent a lot of money on treatments, I tried a chiropractor which gave short term relief, I saw a masseuse referred to me by my pharmacist who did intense massage, and acupuncture, she was a Chinese therapist and again although I did get relief it was short term and money being spent. I also saw an osteopath. With all that I also booked facials and massages at salons for a little relaxation, but I soon found that not knowing how to switch off was one possible reasons to not feeling the benefits. The one treatment that gave me a longer feeling of no or limited pain was a treatment called hijama, it's a middle eastern treatment I believe, but it was the most painful experience ever that I couldn't put myself through it. So what did I get under the NHS? Having been referred to physio they tried acupuncture. I used to suffer from frozen shoulder and acupuncture helped, but as I was in a lot of pain I could feel the needles in my back, but I'd still recommend trying, everyone is different. I have also been referred for cbt through NHS, this is mindfulness in essence, seen a counsellor through NHS too. I requested being referred to a rheumatologist as a startup they can discuss options. Pain management through NHS gave me injections all down the back. Ellen I work and know it's costly and I was desperate, but see what you can get under the NHS. Get friends to treat you to massages, Groupon have some great offers. Bath salts are great. But you need to switch and train your mind to switch off I think that helps? Keep us posted. But hope this helps?

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