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Living with fibromyalgia

Total Wipe out

  •  194 views
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avatar silentjourney

silentjourney

Edited on 30/08/2016 at 21:39

avatar silentjourney

silentjourney

Last activity on 10/01/2020 at 15:18

Joined in 2016


9 comments posted | 5 in the Living with fibromyalgia group


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Just at the moment I'm having a tough time. Even the smallest of jobs takes it out of me. Managed just one thing today, despite the beautiful sunshine where I was. Half way through this little task my legs began to hurt and the pain became such a distraction that I had to ask for some help. Struggled to use the tool for lack of strength and became quickly disheartened. Hubby eventually had to take over.

I've been the glue for so long that's kept the family on task, but I'm coming unstuck myself now. Couldn't seem to lift my sons spirits today either, despite my efforts. He's fretting about college and fear of change. His distress was palpable despite me chore assigning to distract him. He has Aspergers also. He then developed a Migraine with the stress and had to give up.

My body is in some sort of meltdown. Severe rash all over, which itches like hell and is leaving me infected and sore all over. Got temporary relief for the first time in over a month today. Mixed some coconut oil (Solid) with 8 drops of lavender, heated it gently in the microwave and applied it all over. Heaven! Even needed help to do that however.

Couldn't even do any paperwork when I sat indoors to try. Fatigue was such that I took to my bed by 5pm, too wiped out to function. Now it's 2am and I'm wide awake acutely aware of how every little movement of the clothes over my skin feels like needles. I'm still dog tired, but just cannot sleep.

I find myself desperate for a small window of capability, if only to feel that I've accomplished something. Guess i'm just going to have to sit it out until this episode passes. Tired and low with all really. 

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avatar silentjourney

silentjourney

02/06/2016 at 21:03

avatar silentjourney

silentjourney

Last activity on 10/01/2020 at 15:18

Joined in 2016


9 comments posted | 5 in the Living with fibromyalgia group


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Me neither.

I'm severely asthmatic also, so it wouldn't make sense to smoke it (I'm a non-smoker) or to take it orally either. I'm not sure why I've never personally considered it for pain relief, maybe it's the illegal tag that's associated with it. I suspect that it's more about my own ignorance surrounding the drug, as well as my fear, but also my awareness that as an Aspie I'm really sensitive to all meds. The last anti-depressants I took left me even more suicidal than before I took them and nearly ended it all for me. Or at least I did under their influence.

I've seen a number of claim's in the press that imply 'a cure' for autism among other conditions, most of which appear anecdotal (Autistic claims at least) and all of which seem sketchy or coincidental in their timing, but as mentioned, I'm not in a position to comment from experience. I'd like to see more professional research before I considered it as an option, yet I'm aware of others that use perfectly legal highs to gain the same relief. This is not to decry Dave how's experience either, it's just not for me.

My experience with prescription meds for all my other conditions, has been highly variable to say the least and because I was told to take them by a doctor I continued to do so, despite very significant side effects. I know now to be less trusting of GP's claims (I know it sounds unbelievable, but I never thought to challenge someone in authority such as a GP) and to try and be more assertive if I'm in doubt. (They do get it wrong) and also to listen to my body in terms of the reactions I experience. They are valid and it's not for others to tell me how I feel. My bodies reactions are valid and I need to acknowledge that not ignore it.

I am looking at lifestyle changes as the main management of my condition and that maybe naive, but it's really all I have left after traditional medicine and diagnosis appears to have let me down.

I had a particularly tough day today, talking with an OT about my level of daily difficulty now. Post visit, it hit me hard considering the frequency of my falls recently and how very quickly I seem to have deteriorated in such a short space of time. Yesterday, I also overdid it and naturally I was wiped out today, unable to focus for any period and emotionally very depressed by the pain and my predicament.

I'm aware that I don't make a good invalid and that accepting the conditions I experience is a 'work in progress', but I'm also aware that a safe place to vent my frustration when I feel this low; with those that truly understand, is a valuable tool that affords me understanding and insight, that fellow non sufferers, friends and family don't always fully appreciate or understand.

As yet another invisible condition has invaded my body, to add to my Autism, somehow the odds and prejudice seem to have added to my physical and mental torment. It's a familiar path, yet doubly hard now and the burden of explaining to others who are blissfully unaware seems all the more tiresome. I know i'm at burnout and that i'm closer than ever to the precipice, but I also know I need to reach out more, despite my social communication issues and my clear vulnerability. It's a horrible place to be.

 


Total Wipe out https://www.carenity.co.uk/forum/other-discussions/living-with-fibromyalgia/total-wipe-out-980 2016-06-02 21:03:54

avatar Benson21

Benson21

03/06/2016 at 17:48

Good advisor

avatar Benson21

Benson21

Last activity on 29/12/2024 at 17:48

Joined in 2016


9 comments posted | 2 in the Living with fibromyalgia group


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Hi Dave, your comments were really helpful about the use of marijuana, but what type is it that gives you the pain relief. I too do not smoke and cannot stand the smell of the one that they tend to smoke. Would i need to be referred back to the pain clinic, as at my last visit i was prescribed palexia( but again this has little effect on my pain) and discharged as i was told this was the strongest they could prescribe before putting me on morphine. Thanks.

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k clifton


Total Wipe out https://www.carenity.co.uk/forum/other-discussions/living-with-fibromyalgia/total-wipe-out-980 2016-06-03 17:48:01

avatar Myfibro

Myfibro

13/06/2016 at 20:15

avatar Myfibro

Myfibro

Last activity on 20/06/2025 at 21:45

Joined in 2015


7 comments posted | 4 in the Living with fibromyalgia group


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I'm not sure to whom this was will help but it has been amazing for me- I'm ten years with Fibromyalgia first few years pretty much on painkillers and bedrest.. Over the years mornings I rest then I'm OK for four-six hours as long as not too much going on. Still its existing and not living!      This year I started twenty 90minute sessions in a hyperbaric oxygen chamber..I tell you now it was tough to not panic at beginning but stay calm the results in your body will be amazing.. You wear a mask over your face and are in a sealed chamber that decompresses from 23 - 33 feet in depth..then for an hour you breath in neat oxygen with the pressure at depth then forcing the oxygen into every cell in your body 2.5x more than breathing. You think, every cell chocker block with oxygen regenerating your whole body!!!!  Six sessions in and I began to FALL ASLEEP MYSELF NATURALLY!!! Haven't done that in ten years,fall asleep and mostly sleep through...Wow!!!     From sessions ten onwards the pain melted away..I could feel it decreasing!!!.. After twenty sessions asap I now have 1 session a week to keep it going.. I'm me again , I can cut grass, lift shopping and clean my own house..now with no pain and reasonable energy-AMAZING!!!    Please please look this up HYPERBARIC OXYGEN CHAMBER THERAPY!  see for yourself..I know the pain and frustration of FM..you do not need to live this way.. This is amazing and will help millions if the word could be spread.

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Dawny


Total Wipe out https://www.carenity.co.uk/forum/other-discussions/living-with-fibromyalgia/total-wipe-out-980 2016-06-13 20:15:04
avatar exit

Unregistered member

30/08/2016 at 21:39

You can be prescribed Medical marijuana, only from a Pain specialist clinic. I have chronic neuropathic pain from back surgery 28yrs ago, and a RTA five years ago. I have a spinal cord stimulator in cervical spine, and waiting for a second, for lumbar. I'm on heavy opioids. Fibro comes in severe flares. I find the exhaustion dreadful. I have been told that LDN - low dose neltroxone - has excellent results for Fibro. You need to be detoxes from all opioids to start LDN, so I'm not willing to try until after SCS surgery.

sorry for long answer, and not sure what is available in NHS, as I live in Ireland.

DAve I can understand you taking vapour, trying to work as a builder must be a nightmare with fibro. So many think you have nothing wrong with you x

 


Total Wipe out https://www.carenity.co.uk/forum/other-discussions/living-with-fibromyalgia/total-wipe-out-980 2016-08-30 21:39:02
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