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Help please... no idea what to do for the best.

(12 Posts)
TheLadyAnneNeville Mon 17-Feb-20 09:17:28

I’m 58. I have fibromyalgia. My mum had very bad psoriasis all her life. My sister has ulcerative colitis. So, a family tendency to autoimmune issues.

My GP gave me Duloxetine for the fibromyalgia. It has helped with aches and joint pain but .... I AM SO MUCH MORE FATIGUED with it. I hate it and want to come off it. I saw her recently and she said she’d up the dose as it was having a good effect and any tiredness should dissipate within 3-6 weeks. It hasn’t. I wake up tired. I need a nap in the afternoon which I really can’t do and am falling asleep by 8pm. I’m cold/getting chills. My hair and skin are parched. My nails are splitting (always had good skin, hair, nails). Is it just my age? I’m on HRT. Is it the AID connection? It’s SO getting me down. I feel utterly sad and pointless. I’ve gained weight despite giving up wine 🙄. Not that I overindulged, it’s just that half a small glass of red wine has me nodding off after dinner now!

Is this just how it is as my age? My DH is fit as a flea. As was I. It’s like his wife has disappeared to be replaced by me.

Any thoughts or suggestions are very much appreciated.

OP’s posts: |
AnotherthreadAnothername Mon 17-Feb-20 15:14:25

Hi there OP,
I have had fibromyalgia for 13 years now and like you, am no longer the woman I once was. Sorry I cant advise you on the meds you are on for it as I choose not to take anything (I tend to suffer the side effects from most drugs so I find I am best not bothering with them) and try to muddle through working with pacing, meditation/mindfullness and generally listening to my body - yes it took me a long time to get to this point. I do understand the fatigue though. In the early years, I would spend most of my days in bed either resting or sleeping yet the more I did that the more tired and exhausted I felt. I have gradually got it so I potter around for 30 minutes or so and then rest for 15 minutes - have a brew, catch up on mn, fb etc - then I go back to pottering around the house again doing whatever I can manage at that point. I also try to maintain the same bed time and 'wake up' time in a morning even though I dont sleep well and am a long long time (pre fibro) insomniac.
I am just wondering if you have Vit B deficiency or low Iron or low Vit D? I am regularly low in iron and am on daily vit d ( many fibromites find they are deficient in vit d). Also have you had you thyroid levels checked lately? Low thyroid can cause weight gain, tiredness, hair issues etc.
Sorry I cant help you further but just want to say you are not on your own, I do understand what this horrible condition is like. Feel free to pm me if you ever just want someone to talk to smile For you flowers

TheLadyAnneNeville Mon 17-Feb-20 18:37:42

@AnotherthreadAnothername thanks for replying. I really do wish I hadn’t started this medication, but I couldn’t move/turn over in bed - the joint pains were so bad. I’m assuming that’s what’s making me feel tired and nauseated although my GP assured me it’d wear off after a few weeks. It hasn’t. NOW, I’ve to go through the “coming off” of Duloxetine which is apparently a tough one to wean off.

And I’ve no bloody idea where it’s come from. I’ve been active all my life (up to now). Is this IT? Forever?

I will ask my GP about thyroid. I made an appointment today for 24th March 😡. The earliest one I could get because it’s not an emergency.

I’ve started taking Vit D twice a day. Will get some B Vit Compound or is it a particular B Vit?

OP’s posts: |
AnotherthreadAnothername Tue 18-Feb-20 13:34:59

Hi The Lady,
You will probably be best with prescribed Vit D and Vit B if you need it - the general ones that you get from the shops etc don't seem 'strong' enough to correct any deficiency if you get what I mean.
With ref to the meds, we do what we need to do to make it through.
You do learn to 'manage' the symptoms to some degree. That said, if you are fairly new to fm, you will likely find that once your body is more 'settled', the pain levels will go through flares - sometimes it is a really tough day and you will need the meds/heat packs/cuddle up on the sofa day/a stay in bed day and other days will be better smile The flares can come because you have overdone things, you are worrying about things, you are under more stress than usual, you are unwell - cold, stomach bug - a change in weather or simply because your body chooses to flare. The recent storms have played havoc with my symptoms, but I know they will settle again at some point.
I was told that because fm is not curable then we have it forever but dont let that thought get you down too much, as I said with time you can learn to manage some of the symptoms one way or another smile and the pain levels have to change for you, be them go up a notch shock or down grin they cant stay the same for always.
As I said before, if you need to talk away from the boards, you are most welcome to drop me a message. Take care and be kind to yourself.

AnotherthreadAnothername Tue 18-Feb-20 13:39:16

Just another thought, have you considered you may have chronic fatigue syndrome as well as fibro? A lot of us do. May be worth mentioning to the doctor when you see them.

TheLadyAnneNeville Thu 20-Feb-20 08:52:24

The problem is, my GP hasn’t suggested any Vit level checks/thyroid check etc. She’s not very open to my suggesting “can I have ... test?” so, I just ended up with increased antidepressants.

I’m not sure about chronic fatigue. Personally, I’m on the go from 7am til “late”. Last night, I was still sorting the dryer out at 11.50pm. I think I’m tired because I should be! IYKWIM? If I get to sit down mid afternoon, I can easily nod off but then I’m up and about....busy busy busy because I have to be.

OP’s posts: |
NeverDropYourMoonCup Thu 20-Feb-20 09:12:12

What are your ESR and CRP?

(Psoriatic Arthritis patient here)

Or has the GP taken one look and assumed you need antidepressants instead of a rheumatologist?

TheLadyAnneNeville Thu 20-Feb-20 13:03:26

She referred me to Rheumatology as an outpatient in June last year. Still waiting. She put me on the antidepressants in the meantime, as I say, they’re working well for. The paid angle but I feel like absolute shite.

OP’s posts: |
TheLadyAnneNeville Thu 20-Feb-20 13:04:07

They’re WORKING WELL FROM THE PAIN POINT OF VIEW 😡

OP’s posts: |
RedRed9 Thu 20-Feb-20 13:14:33

I was on duloxetine for a year and sympathise massively with the tiredness. I had to change my lifestyle to have more time for rest.

They side effects did get better after a few months.

No medication is side effect free. You have to figure out the balance that you can cope with. (Pain relief vs side effects.)

For me; I decided to try without it. It was really hard work coming off of it so if you do the same then take your time and reduce your dose slowly and carefully. Consider as we’ll that duloxetine is used for treat anxiety so you may feel more anxious after you’ve come off them, even if you didn’t feel that way before.

TheLadyAnneNeville Thu 20-Feb-20 23:09:43

Oh God @RedRed9 that sounds scary. I’ve been on them 4-5 months or so, maybe less. The thing is, the nausea is like morning sickness but without the actual vomiting. Terrible. All the time. And certain smells make me gag. I find that I’m eating little and often and what with the tiredness, I’m gaining weight. THIS is one of the few antidepressants that can cause weight LOSS ffs!

Because I’m unable to get a GP appointment I’ve booked in to review my meds with the surgery’s pharmacist next week.

OP’s posts: |
RedRed9 Thu 20-Feb-20 23:33:35

You can ask for anti sickness tablets to help with the nausea. But obviously that won’t help with the weight!

I put on weight on them too. And, like you, I think it was more to do with being to tired to actually move and also eating little bits all the time to try and give myself energy. None of it good food of course because I was too tired to spend time in the kitchen!

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