I have Fibromyalgia - Ask me anything

[clairethewitch70]

I was diagnosed around 2006. Willing to answer questions.

You said that you have Hashimotos - what medication are you taking? There are some researchers who believe that T4 only medications like Levothyroxine are increasing incidences of Fibro because actually what the patient needs is T3.

Cross post ISdads. Do you take natural thyroxine?

@MeetJoeTurquoise - I suspect mine is related to Hasimoto's which is autoimmune hypothyroidism

@Bumblebee39 - I don't drive any more for both reasons. Fibro means I can't turn my neck for reversing and my arms ache in driving position. Two of my drugs carry a driving warning on the box.

@ISdads - I don't get to see my test levels. Although I know for a while in 2015 my TSH went to 14 as I stopped taking levothyroxine for 6 months. Dr. won't test t3. I would love to try natural thyroid hormone (armour? I think it is called). Not available on NHS. I know I was on bovine/porcine thyroid replacement 22 years ago as that was what was on the market at the time. I am vit d deficient and take invicta ampoules monthly.

@mytieisascarf - I take levothyroxine 100mcg every other days & 125mcg every other day. It is very hard to get a doctor to agree to test t3.

From my (limited) experience- pretty much everyone I e come across with fibro has a MH history in teenage years, and have been on antidepressants pre diagnosis, sometimes years previously. Was this the case for you OP or any other people posting? It seems like there is a link there potentially.

Are you registered as disabled? My Dsis (48) has fibromyalgia and osteoarthritis but still works full-time as she has heard so many horror stories of people trying to make a disability claim and being rejected.

In reality she should not be working or only part-time but can't afford to. Luckily her partner was her boss for a long time so she has been able to take periods of sick (1/2 weeks a couple of times a year) but she can barely get up the stairs - in fact she can't without help.

She gets home from work and falls asleep on the sofa and has to be helped up to bed, she is constantly exhausted. She has 2 morphine patches a week, didn't get on with amitryptiline and can't take the gabapentin as it's in tablet form and she has a phobia of choking on tablets - this is restricting her medication, she has had steroid injections in her knees in the past.

Sorry, also I don't know what triggered it with her but she had constant kidney infections, back pain from being in her 20s and also had 2 controlling abusive husbands so never a calm environment.

Have you tried a very high fat, low carbohydrate diet?

I know of a few people who have massively eased their symptoms and have read of many more who have done the same

Thanks for starting this thread. I’ve had a very recent diagnosis and I’m struggling.

Thanks for the thread OP.
I have a quick question for those who have Fibro who are on here. Do you ever get really bad pains in your fingers, sharp pains that could bring tears to your eyes?

Mine have recently started locking. Don’t know if it’s related.

Just ask what your tsh is. The receptionist can tell you. Some people need theirs suppressed completely. If it is over 2, it shouldn't be if you still feel shit. Bet yours is about 5. I felt like death at 5. Thyroid brain fog, terrible pains, also meant my body wasn't making vit d properly which caused even more pain.

Oh, invicta looks cool. I just neck huge amounts of vitd lower dose tablets. How much do you take? I take about 10 000 iu daily to keep the pains away. A lot of my pain came from vit d deficiency but even the tablets just keep my levels borderline low. How about you?

@SD1978 - I have suffered from depression since 18 and was on prothiaden, oxazepam and later prozac for most of my life since then. Interesting possible link. What made you notice this?

@AugustRose - yes, I have a blue badge. Was on a lifetime DLA award, medium care and high mobility. Transferred to PIP 2017, home assessment was awarded enhanced care and enhanced mobility for 10 years. As far as I know, there are no lifetime awards on PIP, 10 years is max. I have multiple other medical and mental health conditions though, so these may have helped get PIP. She really ought to apply for PIP. Two things I noticed - she has a phobia of choking on tablets - I have dysphagia and am now on liquid medications. So this may be fibro related. Constant kidney infections - me too, started when pregnant with DS1. Took my bags with me every antenatal appointment, was admitted for most of my pregnancy with urine infections and pre-eclampsia. They have continued. Currently being treated at the moment at the rate of one per month at least. GP says it's IC.

Interesting. I can’t take a normal asthma inhaler as it makes me choke and sometimes worse.

@mooncuplanding. I haven't tried that no. I have been vegetarian since aged 14 and am almost vegan now. I have no energy to cook so DH does most of the cooking. After a long day, it is usually pizza & chips or a premade lasagne and salad.

@wolfiefan . Do you have a supportive family? I massively rely on mine. DH is a star. He helps me shower and dress before work, cooks and does most of the housework.

@sazza76 My fingers on left hand lock, especially ring and little finger. I get crushing pain in my wrists. Interestingly I worked in the NHS in the late 80's, early 90's and was retired on ill health grounds with tenosynovitis. Interestingly I have multiple issues with tendons randomly getting sport injuries just from daily activities.

@ISdads - I know it was 11 on diagnosis, 14 in 2015, and never gets below 4. In 2015 when I stopped my meds due to MH I was admitted to hospital with thyroid related dementia (amongst other things). Invicta I take 1 ampoule a month. My younger son was so deficient, the doc said it was the lowest he had ever seen. He was on 2 ampoules a week. My last blood test for vitd was normal because I take invicta.

Also I just remembered a suggestion. The best vitamin product I have found for Fibro is called Alive, Womens Energy. Available as chewables or normal horse sized tablets. Don't feel like they work, but when you run out, you wonder why you feel crappier! Also I am off all anti-depressants/psychotics and take St. Johns Wort (with GP approval). DH says he notices a decline in my mood when I run out. I think it doesn't work but those around me assure me that it does.

@wolfiefan. Sometime the dysphagia is really bad. Struggle mostly with liquids. That never goes. Sometimes food, but always liquid. Notice loads of catarrh too which doesn't help the swallowing.

Thanks. DH is fab. I don’t work because of my health. He’s great with the kids but there are certain things I can’t leave to him. I have to walk the dog. I have to do the school run. I have to cook etc. He’s not here.
Had to laugh. Consultant said i would have days where I could walk the dog for an hour or two and some when I couldn’t get past the front gate. Soooooo not an option
I’m on loads of pills. Fibromyalgia diagnosis for me has coincided with dreadful eczema. So bad I’m on immunosuppressants. On duloxetine and amitryptyline too.
Haven’t tried St Johns Wart (doesn’t it interfere with the pill?) Other friends have had success with CBD.
GP been a bit rubbish TBH. Just wants to throw a pill at the problem and have me go away.

X post. Catarrh? I am constantly blowing my nose. Been on antihistamines. No difference. Is that related? No info from GP at all.

@wolfiefan - I am on 4 times dose of cetrizine daily ( Consultant). I have multiple allergies, not sure if Fibro related. I keep being told to cut out dairy ( I am almost vegan - eat honey and eggs). Glad DH is good. It makes all the difference having family support. My DH used to have to do the school run before the council provided a taxi. Now they have both left school, although youngest is in college.
Not sure if St. Johns Wort interferes with the pill, possibly as it does affect a lot of medications. If you do try it, get a reputable brand as cheap brands may not be so consitent with the strength.

Have you read the spoon theory?

arizonapain.com/fibromyalgia-spoon-theory-explains-patients-ration-energy/

@wolfiefan - re blowing your nose all the time - are you on opioids? GP said they can make your nose run.

Don’t think so.
I know nothing.

I just want to put a disclaimer here. I am not medically trained. Only describing my personal experiences. Make sure you tell dr's any new symptoms you may be worried about. And if you decide to take St. Johns Wort, make sure any prescribing dr knows as it interacts with lots of meds.

My sister was was made redundant 2 years ago and started suffering from extreme migraines which developed into general pain. She deteriorated so quickly that she’s now in a wheelchair and has to climb up the stairs on all fours. It’s heartbreaking. She’s had CBT and tried all kinds of pain relief but everything seems to give her migraines so she’s never able to try a new drug for longer than a few days.

She says that looking at a screen gives her migraines so she can’t watch Netflix or do online shopping or send a text message. I’ve done quite a lot of research and haven’t found any evidence to suggest that fibromyalgia sufferers can’t use a screen for limited periods of time. Do any of you struggle with this?

When I talk to her about suggestions / things to try she isn’t interested or says she knows it won’t help. Family friend who is a GP has said that fibro is her new identity and without it she would have nothing. He has also said that she needs to want to get better and be willing to try solutions. How do we help her to get well when she seems to be stuck?

The spoons idea is really helpful. Interesting as they considered lupus when my skin flared and I actually had a biopsy to confirm eczema.
I do make adjustments. If I have physical stuff to do at home then I try and do them before I walk the dog. Afterwards I know I need to rest. But I feel so pathetic admitting that. I used to be fit and slim. Now I’m comfort eating and fat and tired.
I will find a way through. I’m a stubborn mare!