Please help

[Sretaw]

I’m in chronic pain due to fibromyalgia,very lonely, suffer stress and social anxiety. No understanding from GP, Take all meds prescribed .Nothing helps. What do I do ?

[golly123]

Hiya. I feel exactly like you. I just feel awful. I am exhausted, shattered, battling with the NHS too and I am so sick and tired that it's untrue. Sometimes I wonder why I bother actually going to bed. I cry at the slightest things too. I'm 59. My husband divorced me and I live on my own too. Universal credit hounding me down too.

Two things have helped me. I take half a zoplicone (sleeping tablet) 3.5mg every three nights.

Secondly I'm having counselling which started off as PTSD due to a coma I was in last year for 5 1/2 weeks. A coma is not total blackness. I travelled in my coma, I spoke to people, I bought clothes and I was on the run continually from people trying to kill me and my son. And, no, I am not making this up.

The counselling started with the flashbacks from what I saw and experienced in my coma. The counselling has now changed to CBT and in my opinion, is a bit of a life changer. I would highly recommend both.

CBT has taught me to stop ruminating. Time management to push myself (obviously NOT IF IM IN PAIN) and to pace myself too.

All sorts of helpful suggestions to focus my mind. I have a list of things to do - easy, medium and difficult. Frequent breaks. I never put any sad music on and I try, to the best of my ability, to stay focused in the present. To have something to look forward to every weekend - even something simple.

I have learnt that I cannot CONQUER the world in a day but I can conquer a country in a day, as in, instead of cleaning my entire house which becomes overwhelming, I just maybe clean one room. Or maybe just clean the hob. Just little bite size manageable chunks.

It's a bit like a jigsaw. A little piece then another.

I sleep when I'm tired but try only 2 hours max otherwise I feel not so good.

My chill-outs are watching the news. One episode of a good series. Trying to eat properly too and at some point I will try to go swimming again. All gradually.

Some days I get loads done. Some days I don't. But I don't beat myself up anymore, nor do I get overwhelmed. If I'm in pain I just distract myself.

Yes. I am terrible alone. Yes I talk to myself too.

All I try to do is little bits of a jigsaw and bit by bit I will get there.

And as I nearly died twice last August in the coma, just to listen to the birds tweeting makes me so glad that I am alive. I may not be 100% physically fit anymore. But, hey, I'm still here. It could be a helluva lot better but it could also be a helluva lot worse too.

There is also something called the Martian technique. I can ruminate for two minutes. Then stop. Listen and feel your senses. What can you hear, feel, see etc. No more than 2 minutes of going back into the past and a pity party - as in "why me". "I don't deserve this!". Etc.

It's happened, one can't change it. One cannot change the past either. Focus on the day, do the best you can that is manageable. Push and pace and at the end of the day one has achieved something anyway even if it is just cleaning the hob.

So, I try. And for me it has improved my life and made me feel better.

And yes, I know exactly how you feel. I have terrible bouts of depression at times too.

I really hope this is of some help to you. I hope you feel better soon. And as the lovely lady who wrote that poem about fibro warriors, which was excellent said, we are warriors.

My very best wishes Golly.

[Sretaw in reply to golly123]

Hi thank you so much,i feel like I have just read my life in that great detail,it’s like you already know so many things about me,once again thank you keep in touch.

[Sretaw in reply to golly123]

Loneliness

[Sretaw in reply to Sretaw]

Hi,I hope you’re feeling better. Ideally need help in any and every way possible. I don’t know where to start from mental a physical pain top to bottom, inside and out. I’m feeling desperate and selfish when so many people are going through worse. Lots of love xx

[golly123 in reply to Sretaw]

Hiya. I was just wondering how you are? Hope all is well with you. Best wishes Golly

[Sretaw in reply to golly123]

Hi I’m sad,lonely my head is all over the place. I need a kick up the backside just to add to the pain of fibromyalgia.xx

[golly123 in reply to Sretaw]

Hi. I know exactly how you feel. I am so shattered today it's untrue. I actually feel like screaming today.

Something that put something into perspective for me is this. I used to work with someone years ago in 1984/1985. He was a good friend of mine. I last saw him in 1988 at my first wedding. Lost touch. I joined Facebook in March. We reconnected as friends. He's been up and stayed with me twice now. We are just good friends- as though time never passed.

He has Parkinsons disease. He never told me before he came to stay so I never knew anything about it. Compared to fibromyalgia, I feel ashamed actually.

I have mobility issues, joint pain, etc. He was diagnosed with Parkinsons when he was 48. He's 63 now. His wife divorced him 4 years ago. He stammers, he shakes a lot. Compared to him, there really isn't much wrong with me.

I'm 59 now. Only got diagnosed in March this year following a large trauma last July. I have noticed my limitations especially my hands, lifting things, the awful joint pain. I rage inside. Yep I do. It's this eternal rage. Why me. Well, why him. He's lonely. I asked him questions about depression. How he felt when he found out it was Parkinsons.

His answers - very different to mine. He had low mood for a bit. His wife refused to ever discuss his condition with him. She locked him out of the house and divorced him too. He said he just decided it was what it was. Accepted it, learnt to adapt, stopped ruminating, joined groups with others with the same condition (his groups are 2 x a week). Everyone at his groups has a wife, husband of partner. And he just does the best he can.

I see my son about once a week. He fractured his elbow recently so I didn't see him for a bit. Other humans are in my local shop just passing the time of day. Boyfriend?? I don't know really. Might give it another go. Unsure. The rejections masked of course with sympathy really. I'm not that stupid.

The only thing that keeps me sane is selling stuff on ebay. CBT. And swivelling my mind into altered states by my list of happy things. Oh. And my lists. A tick such as cleaning the sink, little things is an achievement. No sad music, no ruminating in the past. I have my go to list to distract.

Oh yep. I hate the loneliness. How do you manage with this? Hope you are having a good day. Mine is OK. I'm just totally shattered but I have to keep going really.

Hope all is well with you. Best wishes Golly

[Hazel_Angelstar Administrator FMA UK Staff]

Hi, you say medication not helping - so this would suggest that you need to speak to your gp about options ie upping dosage, trying another medication. If a medication is not helping, there is no point in you being on it.

Another thing to consider is why you feel it is not helping - does it only take the edge off pain or does it make absolutely no difference.

Many people on medication only get limited benefit and it doesn't take pain away completely

A referral to pain management may help - they can sometimes offer treatments not available through gp, and most areas have a pain management programme where you can learn self management skills

Pacing, exercise/activity, heat, mindfulness, meditation, distraction, cbd, holistic therapies, weighted blankets are all things that help me

[dinkic]

Ask for a referral to a pain mangement specialist, they understand, little point in taking meds if they are not working, they might be better able to suggest different times to take them etc, or additions to them or alternative ideas which might help. So sorry you feel this way it does effect most of us this way, use this site for assistance many very helpful and kind people on it who will try to assist.

[LordGodAlmighty]

I did the CBT course like Golly, test it teaches you to stop when in pain as it's a "STOP Sign". If I were to do that I'd never get up!I get the same rubbish from the GP, this time I'm referred to pain clinic (I think).

I use CBD oil with some effect and have bought a tincture of Wild Lettuce, both . .combined seems to helping the joint movement and daytime pain.

Sleeping is sparse. 3 hours on a good night. I've yet to go back to the GP as the ZopicloneI had was for a triple bypass I had before xmas.

I'll need at least 10mg to sleep to overcome the restless and painful legs.

Wild Lettuce seems to be good stuff, it's legal and the seeds are cheap so I will grow my own too.

Good luck to us all.

[Jaycee18 in reply to LordGodAlmighty]

Ref stopping when you’re in pain. I know what you mean we would come to a complete standstill. My lovely physio suggests rating your pain score 1 - 10 then stopping if/ when it moves up by more than 1 or 2 points on the scale. Then giving yourself chance to rest.

Hopefully by not pushing it too much you can recover more easily but still feel you have achieved something.

[Makie-Uppie]

I am just like others here and yourself, I would change my GP if possible if you find that they lack understanding. I have been through he whole shebang as far as disbelief is concerned, I actually know now of one of the people involved with me is being done for malpractice, unfortunately he can not be prosecuted as a panel of his peers have found him to be too unwell, talk about irony, his treatment is retirement and a golf course. In his case callous would be an understatement. Take the other peoples advice, I am not happy with the screen at the moment, the only setting I can cope with for long is off 😎

[onebigvoice]

Hi, Just felt that I also needed to reply and just to say Golly123's reply is spot on as well. Some of the problem is self worth, and boy when you are in a low ebb, its hard when alone to get out of the rut.

That said my first point is to realise that something is not right? I know it sounds stupid but acknowledge inside that first step is a step in the right direction.

With me I had a diagnosis and then they gave me tablets that the after affects were worse than than the symptom, so getting that right is only trial and error till you get a balance.

But in the mean time try to get some thing that interests you. The first reaction is to say I haven't got the time, or I can't paint anything because I am no good. REALLY, art is in the eye of the beholder..... Look at Picasso? Do you like his work? So for a few pounds and a sketch pad and pencils, sit in the window and paint WHAT YOU SEE? Is it your neighbours TV aerial on the chimney or that piece of wood that sticks out of the fence, you would be surprised or a poem?

When you write about your day?

It could be... I had a tablet this morning,

I was not feeling good.

My back is still hurting.

From that stupid piece of wood.

It sticks out just enough to know that it is there.

But you wait till tomorrow My new mattress will be here.

It does not need to rhyme and when you look back in a few weeks time you can have a chuckle over some of the things you wrote.

Its also good for the jogging notes if you need to see a doctor as its a snapshot of you on the day months before.

Also you can post on here as we do not judge you since like me I am just like you.

Never feel alone, I hope others will comment as well, since we are all in the same boat.

[does-the-NHS-work]

Therapy is in my opinion the void missing from fibromyalgia support, the NHS choices website has some links if you feel you are not being listen too, also charitable organisations such as MIND have professionals that can support you,

For ME nothing has worked better for my so called fibromyalgia diagnosis aside from looking at my mental health, you may not know that mental health symptoms are pain, fatigue, stomach many of the symptoms of fibro.

My GP had almost chosen not to look at my Mental Health and I was probably dismissive, I have had a very successful life until this Pain started. I feel it is almost a GP habit of using the conventional drugs which are in the main antidepressants and I tried most of them for pain but they did not scratch the surface.

I have now two private independent professional assessments of me, major in depth analysis of my life, right back to childhood, psychotherapy and hypnotherapy, with hypnotherapy you are in another mind state so you kind of cannot second guest your answers, what I mean is the answers in this particular study came from my subconscious and the answers, my reactions to the questions were the same my Mental Health is pain for ME.

It took me since 2007 to get here mind.

[Yassytina FMA UK Volunteer]

Hello , I differently would seek out a different GP, one with some more empathy and relates to the condition of Fibro, personally like many others it took trial and error to see the right doctor to help move forward. It can be very lonely for people so it’s helpful too talk here as people understand what your going threw. x

[JayCeon]

Hi - I can only second the great ideas given, adding a little...

Getting your meds changed - a few weeks should be enough to know if they're right for you, I wouldn't be patient about that and stop them if they aren't working, as they will then be harming.

People tend to think changing your GP on the NHS is hard, but there is guidance for that.

Like with GPs you may have to shop around for the right psychotherapist for CBT or ACT for you. That can help with social anxiety, it definitely did me, together with support groups, self help groups, relaxation, mindfulness. Same with pain management - type and quality varies.

Hang in there.