Fibromyalgia Action UK
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Hey

I always found this website to be really comforting at times. But the issue is, I have endo and fibro. I'm also have hyper mobility. Unfortunately, since I was a young teenager I was dealing with bad depression before the physical diseases kicked in. I no longer work from the disabling symptoms. I probably won't have children.

The one thing I always wanted to be is a mother. My only real inspiration for me was I had to get better so one day I could have that. But now with the conditions including the mental health has stopped me in my tracks. I took an overdose a few years ago when I lost everything. Now I sleep, don't really look after myself and I'm starting to get the awful symptoms of anxiety. Paranoi and other symptoms I've never admitted.

I have no idea where to turn to. I'm afraid my family will put me on suicide watch if they knew just how bad it is.

I don't know how to get out this hole. To be stuck to a rope where I can't get off.

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The fact that you have sat and spilled your heart on here is a good sign. The only person who can make a change is you.

I understand the want to be a mother.. me and my husband found out a few years ago that we wont conceive naturally (if at all). This news hit me hard but then I realised that pregnancy is not the only way to become a mother.

So set yourself small goals each week.. and go from there. For example this week try and get yourself up and dressed everyday. No matter how long it takes for you to do it. Next week maybe try going out.. do something new. Even if it takes you all week to plan how you are going to do it with regards mobility. The week after that set another goal. Each time you achieve something be proud of yourself. If you have a bad day that is ok.. make a note of what may have caused it. Maybe find a group to attend (and i don’t just mean a support group - find a hobby that you can enjoy) even if you end up sitting at the back of the group.. its the first step. Think of the positive things in your life and use them to guide you forward.

We are always here if you need us.

Xoxox

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Also be open and honest with your family.. having someone to walk this journey with you can be helpful. Having someone to lean on during the bad times makes the journey forward a little easier to bare.

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Im so sorry to hear of your plight. I agree with Trouble that you should talk to your family, im sure they would be upset to know you are struggling alone.

I also just wanted to tell you about something my daughter has done which really helped her with her pain and fatigue but can also be used to help depression, anxiety as well. Please see old post below. 3 months on and She now has a part time job and is doing open university and although not pain free it is manageable now. I pray you will find some relief and hope in life.

A few weeks ago I posted asking if anyone had heard of the lightening process (LP). I had several replies advising caution. I read some links someone posted which were all very negative and calling it a scam, waste of money etc. However a friend of a friend with ME had done it with great success and my osteopath put me in touch with another ME person who had done it and it had transformed her life. However neither had had Fibromyalgia but the lady advised me to join the LP FB group and ask if there was anyone with fibromyalgia who had done this. I got lots of replies from people who were now living full pain free lives! Clearly you are only going to get people in the group who had success with this but even so I was impressed.

After 3 years of trying to find relief for 19'year old Abby with her having been under pain management for 2 years, spending up to 20 hours a day in bed using heat pads to relieve the pain, my giving her 1.5 to 2 hours massage every night, she was only able to attend school for a couple of hours once or twice a week, had almost no social life and us spending a fortune on food supplements, allergy testing, magnetic mattress, osteopath treatment once a week etc etc we decided to give it a go. There is little we haven't already tried and this was a last resort to find a solution.

So with some nervousness we enrolled my daughter onto the course. Due to her difficulty travelling which would increase her pain we decided to pay extra for one to one to give maximum chance of success. Abby had to do an online training of 4 hours and then a phone assessment to ensure she was fully on board. You have to fully commit to it for it to work.

It works on the principle that brain pathways can be changed. It uses techniques similar to NLP, mindfulness, hypnosis ( but you are not at any time actually hypnotised). In essence it is quite simple to learn the technique but the training covers a lot of theory, much of which is similar to what they teach you in pain management.

The course was 11 hrs in total over 3 consecutive days. I wondered if she would even cope with focusing for 4 hours at a time as after 3 hours of being out of bed she is normally climbing the walls with pain and exhausted.

After day one there was already significant progress. She walked the dog for 15 minutes with no ill effects. She has not walked the dog for about 2 years and walking more than 5 minutes normally causes increased leg pain which can last days or weeks afterwards. She only had a short nap and did some work on her lap top with no,ill effects.

The progress continued after days 2 and 3. She is needing less sleep, is reducing her reliance on heat pads, and we have reduced the length of massage I give her. Now 2 weeks on she is still doing really well. We have just come back from a 3 day theatre fest, travelling to London on the train, seeing 3 shows, doing lots of walking, including spending 3 hrs walking round shops with just a couple of breaks! Today she has had some additional pain in one of her legs, but probably no more than you would expect from having not walked for more than 5 minutes for at least a year!

She is reducing down her medication gradually. She is not pain free yet but we are hopeful that this will happen over time, but even if it doesn't her quality of life is so much better. She can now start to think about her career and is no longer facing a life on benefits.

I cannot tell you what a relief this is for us as a family. If you are able to afford it, I would strongly recommend trying this. No doubt it does not work for everyone and it will not cure structural damage but I still believe it can help with managing pain caused by arthritis etc. if your life is dominated by pain it has to be worth trying. If you cannot afford the course (it is expensive) there are several books available. The one Abby's trainer recommended was "Get the life you love now" by Phil Parker. It is better to do the course, but the book covers everything in the course and is inexpensive.

The process can also be used for depression, anxiety etc.

I would be interested to hear from anyone who does decide to do this and how they get on. Feel free to contact me for more info.

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I've been here. The best thing to do is ask for help. The only way they would put you on suicide watch was they noticed something without you saying anything. It's really good you notice this. Get help from GP and speak to someone or ask for a councillor. It's very difficult to ask for help but it's one step to recovery. I suffer with ocd, depression and now a physically dilebating illness. It's hard but I asked for help with my depression and it's OK to. Good luck and I hope you find peace xx

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Counselling can be very helpful, I got this through my GP surgery some years ago. Can you ask if this is available to you? Just opening up to someone who has no personal involvement is often easier than talking to family. Well I found it helped me.

Please don’t feel alone, we can all listen on here and won’t make any judgements. Everyone has different issues they are dealing with, but we can sympathise.

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You've had some good advice above ... speaking out and sharing how you really feel is an important first step ... because it means that you want to make changes even if you are not sure how to take the first steps.

I would suggest that you tell close family members ...not so they put you on suicide watch but so that they can help and support you.

Next you need to speak to your gp; if you are depressed then you may need medication (or if you are on medication you may need your dose adjusted )

Having a family member or friend to go with you to gp appt can be a good source of moral support and strength.

Then the next steps are to set yourself small goals ... it can be as simple as getting out of bed for an hour to watch TV; doing something you enjoy for a short while; anything ... and gradually you may find that you are setting more small goals ...and then bigger goals.

Fibro hugs ...believe in yourself that you can get yourself back on track again

Xxx

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