Fibromyalgia

[Jennet00]

Fibromyalgia

No idea if any other member has this bloody aweful illness, but it is so f*******g frustrating that I simply can't find the words I want.
Bad enough that it comes with built in Brain Fog, but making me feel so useless is unforgivable!!!!
Sh*t.... just want to rant on and on... but I won't ...... Just wondered if any other member has this terribly frustrating illness? :Tongue_Out_Emoji_wi

 

[Jeanette]

No idea if any other member has this bloody aweful illness, but it is so f*******g frustrating that I simply can't find the words I want.
Bad enough that it comes with built in Brain Fog, but making me feel so useless is unforgivable!!!!
Sh*t.... just want to rant on and on... but I won't ...... Just wondered if any other member has this terribly frustrating illness? :Tongue_Out_Emoji_wi

Hi I haven't got this terrible illness but I have a couple of friends that have it,and as you say it frustrates you and the brain fog doesn't help! As well as other things that happens to you with it! I know it's hard but try not to get frustrated with it if you can't do something today try not to worry about it there is always tomorrow to do it! I know it will be hard to do that but it might make things worse!! I know a few on here that has health issues including me, I do hope that can learn to just say ooh well I will do that tomorrow my consultant said little and often is better than doing it all at once and then being poorly!

 

[Jennet00]

Thank you Jeanette.... suspect I have had this since my late 20's/early 30's, so in many ways sort of reconciled to it long ago. However, presently facing capability process at work and it is so bloody hard to get through this at right now.... still, crying a river (often for no more reason than I feel like it) helps a bit.... even if it does make me look like kurmit the next day! :wink:

 

[channa]

The good news if there is any , is at long last the DWP are acknowledging the condition in respect of PIP and ESA different benefits/support but a step in the right direction

Channa

 

[Jeanette]

Thank you Jeanette.... suspect I have had this since my late 20's/early 30's, so in many ways sort of reconciled to it long ago. However, presently facing capability process at work and it is so bloody hard to get through this at right now.... still, crying a river (often for no more reason than I feel like it) helps a bit.... even if it does make me look like kurmit the next day! :wink:

If want to have a bit of a cry you do it love and as you say it does you good ? and as channa says the DWP are finally acknowledging it!

 

[GWAYGWAY]

This is a disease that is very closely alligned with the Vitamin D3 and K2 difficiency. They need to have a blood test and put on a high dose of both of those. Osteomalacia and osteopaenia ar ethe next steps, probably got very poor teeth as well. This is an upcoming research program and it is becoming VERY important as other diseases are also connected to it.

 

[trixie88]

This is a disease that is very closely alligned with the Vitamin D3 and K2 difficiency. They need to have a blood test and put on a high dose of both of those. Osteomalacia and osteopaenia ar ethe next steps, probably got very poor teeth as well. This is an upcoming research program and it is becoming VERY important as other diseases are also connected to it.

may also be deficient in magnesium too....

 

[Jeanette]

This is a disease that is very closely alligned with the Vitamin D3 and K2 difficiency. They need to have a blood test and put on a high dose of both of those. Osteomalacia and osteopaenia ar ethe next steps, probably got very poor teeth as well. This is an upcoming research program and it is becoming VERY important as other diseases are also connected to it.

Is it known that they have poor teeth GWAYGWAY? I have a couple of friends that have this illness and I'm sure they have good teeth. But I will ask next time we meet up

 

[Admin]

I have been diagnosed with Fibromyalgia, and to be honest, it is not very nice.
I have disabilities that I have learned to live with but this really has affected my day to day life. I can go from feeling great to being totally drained and in severe pain in about 10 minutes. It is like someone unplugged me and through me in a pot of boiling water.
For the most part, I find the loss of my mental agility (fibro fog) and sudden fatigue to be the worst symptoms.
For the pain a take Pharmacy strength ibuprofen lysine (not the normal ibuprofen) and paracetamol together, they work quickly and the worst of the pain is dulled within about 15 minutes. I only take these when I have the scalding pains and I try and ignore the aches.
Having 2 hours sleep in the afternoon does seem to help when I am having a bad period, I suppose it is better to recharge before I go flat.

 

[yorkslass]

I think a nap is a good idea for anyone with debilitating problems.
So often people try to carry on, push through with an 'i won't let it beat me" attitude, but pay for it later.

 

[trixie88]

Hi there can put me down for Druridge bay have just joined my name is lolbrown1957 x2

think you might have to go on the meet topic for druridge bay and put your name down there.........

 

[Jeanette]

I have been diagnosed with Fibromyalgia, and to be honest, it is not very nice.
I have disabilities that I have learned to live with but this really has affected my day to day life. I can go from feeling great to being totally drained and in severe pain in about 10 minutes. It is like someone unplugged me and through me in a pot of boiling water.
For the most part, I find the loss of my mental agility (fibro fog) and sudden fatigue to be the worst symptoms.
For the pain a take Pharmacy strength ibuprofen lysine (not the normal ibuprofen) and paracetamol together, they work quickly and the worst of the pain is dulled within about 15 minutes. I only take these when I have the scalding pains and I try and ignore the aches.
Having 2 hours sleep in the afternoon does seem to help when I am having a bad period, I suppose it is better to recharge before I go flat.

Admin I knew you had Fibromyalgia but didn't like to say and hopefully your feeling okay

 

[havingfun]

i decided i had fibromyalgia when i was in my fifties, i had had growing pains,,mirgrainges, at one time maybe m.e. ,multi joint syndrome,etc, nobody could put a name to why i would suddenly have such pain and tiredness, never missed a days work, but i,ve seen me come down the stairs on my bum, we had a hotel , and i cooked breakfast, so had to get downstairs. luckerly i,ve always liked swimming and water aeorbics, massages, a nap every afternoon, gentle walking, all things that now are classed as essential, i just did them because they made me feel better, went to osotpath,because again made me feel better.lots of multi vitiamins, again dident know it was good but seemed to help.as somebody said, teeth, i had lots of crowns, bridges etc, and was in spain 5 years ago, bridge broke again, and when i went to dentist he sent me for a full scan, found out i needed all my teeth out, and an operation to clean the infection from my jaw and cheekbones, went in with a full set of teeth, and 24 hours later all out and implants, the dentist said if the infection had got in my bloodsteam it could have killed me, and i went to the dentist every 3 months,and they said it wasent anything i,d done or not done, it was my body attacking itself.

one bit of good news, as i,ve got into my seventies, it doesnt seem to flare up the same, still ache, and can get tired for no reason, but nothing like when i was younger..

mags

 

[GWAYGWAY]

Phil, I think it might be well worth you just trying out the VITAMIN D3 about 10000 iu capsule and some K2 about500 mgs. Cheapest on the Ebay where I get the years supply.
I know people are dubious but it is a very widely deficiency in the Northern latitudes especially in autumn and winter.. We evolved in the sun and were meant to be out in it by nature.
There is a video on Youtube by professor Michael Hollick that explains it, and the effects on the calcium in the body. The K2 directs the calcium to the bones which are low on calcium and needs to be there or it goes into the bloodstream, like mine did, causing plaques. Try it Mate, just to see how you get on.

 

[Fifer]

Fybromyalgia is a horrible illness which combined with M.E. and other debilitating illness is not understood by many professional people and the general public. My husband has had these illnesses for nearly 30 years, and yet to loom at him he looks 'normal'. It is about time govt recognise this illness and that members of the public are not so quick to down people who are okay one day and bed ridden the next. On a bad day Donald sleeps 23 hrs on a good days he takes extra pain killers to enable him to partake in wildcamp meets and life in general. It is a shame, but also good to read here that other people understand this horrible illness. I just wish I could take away some of the 24/7 pain he goes through to ease his life.
Sorry to grouch here, but people and professionals need to be aware of this illness.
Not only does it affect the patient, but also impacts on their families too.
Please support in anyway that you can to raise awareness of this disease. Plenty fundraiser gets done for other illnesses, but very little for M.E.
17 MILLION people have this illness! Rant over, sorry.

 

[Jennet00]

@ admin.... I take Pregablin 3 times a day for the pain, and this does help somewhat.... another one that some people get prescribed is Gabapantin - both are nerve pain drugs or anti epileptics and work for some people.... The difficulty with over the counter pain meds is that using these for very long term, ongoing problems they can have an effect on liver or kidneys (I am now in stage 3 kidney disease). I am now very careful about any meds I take and will discuss everything with my GP as well as do a lot of other research before I even consider taking anything else. (I am already on 12 tabs per day)!

I have had fibro and CFS for around 30 years now, and I am now 60. The two meds GP has prescribed following various blood tests over the years are Desunin (Vit D) and Ferrous Sulphate 210mgs... (Iron) both prescribed by GP. As yet, not had any other deficiencies flagged.

If anyone wishes to know of a good forum for UK Fibro sufferers this is (hope link is ok)?? http://www.fmauk.org/forums It has a lot of good advice, so would be good to read for others that have fibro or know of people that do, who may not have much knowledge of it yet.

Two good ways of explaining what it is like to have fibro to someone who has no idea on there are The Spoon Theory, and Letter to Normals... quite useful, I think!

Brain fog element is worst aspect for me presently. Under capabililty procedure at work due to memory problems... Oh well... such is life!