Suggestions, Opinions and Help - Fibromyalgia Acti...

Fibromyalgia Action UK

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Suggestions, Opinions and Help

malonso6884 profile image
5 Replies

Hi everyone!

I'm brand new here and just wanted to talk to some others who understand what it's like to live with fibromyalgia (FMS). I am 51 years old and was diagnosed 2 1/2 years ago. I was put on a medicine regimen of several medications - Tramadol (100mg/ day), Cymbalta (30mg/day) and Seroquel for sleeping (25mg/day). In the past several years all of my medications have been doubled and I was really seeing great results. Of course I would still have flare-ups now and then but I didn't have the horrible, all-day pain and bone-crushing exhaustion. I actually thought I had it beat. HA! I wish. I am in Atlanta, Georgia and the weather changed from record heat to cool fall days the week of Thanksgiving and ever since then, I feel like I did way back when it started. I am in so much pain in my hips when sleeping, it feels like my bones are laying on a metal cot. I work at a computer all day so my hips, below my hips, wrists, elbows fingers, shoulders, neck, upper and lower back hurt all day everyday. This morning I almost feel asleep in my car on the way in. Unfortunately I commute over an hour each day, both ways and being that tired can be dangerous not only for me but other drivers around me.

I went through menopause early so I am always hot. I keep my house at like 63 degrees (not during the summer although I wish) but now that it's cooler it's like heaven. I wanted to know if others are affected by the weather change. I've ready many articles that say it doesn't contribute to flare-ups but the people writing them don't have it. You only know if you have FMS. I also am interested in hearing people's thoughts about alcohol and FMS. I do usually have a drink or 2 in the evening after work and commute. Does anyone think that the intake of alcohol can affect flare-ups? I have not been exercising like I previously did. We just went through a move into a new home that took almost a month to complete and I'm still reeling and living from open boxes. I just don't know if something specific caused a 2 week long flare that I don't believe is going away any time soon. I'm not interested in stronger pain killers than Tramadol because I don't think they will help.

I would love to hear some stories of what happened to you, how you got diagnosed and what has helped you live with it. I really would appreciate your time and knowledge. I know I just have to ride it out but it's just wearing me down physically and emotionally.

Thank you guys!! I look forward to speaking with people who get it!

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malonso6884
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5 Replies
RayB profile image
RayB

As you say " those who give the advise do not suffer with the condition" never a truer word!

Speaking personaly I have a very hard time with the change of season,, especialy this time of year. Having said that you have just spent a month moving house and are now living out of boxes and if your anything like the average person fibro it can take a very long time to get sorted between the exaustion and the fog.

One of my observations over the years is that there is three forms of stress.

Mental,, the only one that most seem to recognise.

Phisical,, the demands you place on your self phisicaly,, irregular bed times or lack of rest,, digesting while you should be resting, trying to sleep in a room with light breaking in,, Mobile phones,,, Wifi,, all more stress and much of it underestimated.

Last but not least:

Systemic stress,, this is basicaly about what goes into your body,, how it is processed and eliminated.

Everything from the water you drink to the air you breath. Perfume,, Cleaning products, and what you eat. All place a demand on the system yet we usualy don't think of it.

I believe that we must give ourselves as easy a time of it as possible and where possible and if we don't,, well we pay for it!

This is a very simplified answer but the scope of it is huge in what it can encompase,, just as the scope of fibromyalgia seems to be alot bigger than the credit it currently afforded.

I hope this is of some help.

Best Wishes, Ray

milliemutt profile image
milliemutt

Hi,

As I was reading your post I was thinking that I could have written this - so much of what you say is the same for me. I am 51 years old with a teenage son and work full time as a university librarian. I live about 30 miles from work but had to give up driving as I found I was fighting against falling asleep (I actually did nod off for a microsecond and the tyres hitting the curb woke me - scary) I was also getting very stressed about driving and suffering anxiety attacks even about stupid things like if I would find a parking space or not. now take public transport which I find a lot less stressful but it can be very tiring as it involves walking, subway and train.

I was only diagnosed in January of this year but had been suffering for around 5 years and was receiving treatment for pain, anxiety and skin problems. Currently I am prescribed Tramadol, Amitriptyline, and duloxetine - together the sort of keep the pain at bay but I do have some days worse than others. Sleeping is difficult as lying too long in one position is painful so I normally sleep for 3-4 hours at a time.

I'm also hot all the time and seem to break out in a sweat if I blink too fast. Thought the cooler weather would help but having to wear warm clothes outside and then sit in a overheated office all day makes it worse. I do feel less sluggish and suffer from less headaches when the weather is cooler

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff

Hi and a warm welcome to our community. You can find more general information on fibro on our main site fmauk.org

You've been through a stressful period with moving house, and this will be having an impact on your fibro.

I know that changes in weather also affect my fibro - I do better in warmer weather than cold or wet.

Regarding alcohol, everyone is different eisteddfod how they can tolerate it however as you are on regular medication, drinking regular is not recommended xxxx

YASMINTINA profile image
YASMINTINAFMA UK Volunteer

healthunlocked.com/fibromya..., hello there and welcome., I too had an early menopause, did me no favours as have osteoporosis in places already, Autumn here and lots of continuous wet damp days which my Fibro does not like, I have a g glass of wine now and then but my meds won’t allow me too have much , I have got use to this and only notice if I’m with people socialising which is not so often as get fatigued quite quickly, moving house is a big change so I hope you can pace yourself perhaps a couple of essential boxes at a time , I used to have a set routine every day but now I think some jobs can go into the next day or day after if need be, not working now late fifties but being a homemaker and looking after my little grand boy still keeps me positive, driving short journeys is helpful but nothing too far away as get uncomfortable. Do you work full time /part time as this must be very tiring let alone trying to run your household.

skit profile image
skit

A not too warm welcome if you feel hot(lol) Weather changes always get Fibro going more. Wet dull no good. Too cold useless. Gentle heat great. Very hot just makes the fatigue worse

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