Treatment recommendations?

Bones, joints and muscles
1

I’ve discovered that I am very sensitive to medication, I always seem to get the unpleasent side effects...

I started on citalopram and Amitriptyline, had to come off the citalopram because I was getting the tremor/shaking feeling in my head constantly which just increased anxiety, Amitriptyline made me too drowsy and I really struggled to get up although it did seem to take the edge off the pain. Paracetamol as and when, but they do nothing, I tried naproxen but they kept giving me gastro problems and currently I’m being treated for possible reflux or some problem with my oesophagus (which I believe is worse since coming off the Amitriptyline, is this to do with oesophageal muscles not relaxing properly?) so have been advised to not take ibuprofen!

Waiting on some blood tests to be done next week and the gp has advised me to wait and see what the results are before we move forward again with treatment options... I cannot cope with the pain I’m in at the minute, mainly my upper back, neck, IBS and the worst parts are my shoulders and chest, is there anything for fibromyalgia that can be prescribed to take just during flare ups? I don’t really want to be on long term medication if it can be helped :-( 

I was hoping to try and manage the symptoms with physio and exercise but it’s not enough at all, the pain is taking over my life! 

2

hi I've been trying loads of different medications . And the only ones that help are tramadol and pregablin . I only take them when I'm really struggling . And as for physio makes it worse x

3

Hi Chelsey, 

I have had fibro for 3 years.  Iv tried nearly all medications and the side effects were terrible. Efexer was the worst ones I tried. I experienced electric shock feelings in my entire body specially in my feet when I walked that would travel to my whole body. That lasted months. I’m now on Lexprim (paracetamol and tamadol) I am trying to ween off them slowly because they don’t do a lot but every time I miss a dose I get the electric shock feels again. I used to take 8 a day and I’m down to 4-5 tabs but can’t seem to drop any more. It’s been like that for 4 months now.  

I am taking amitriptyline for 2 years 50mg a night. They take about 1-2hrs to make me drowsy and then iv no choice other than go to bed. I am so used to them now I know what time I should take them at before I go to bed. 

In the morning I feel hungover and really stiff but it doesn’t last long (maybe 20-30mins) I actually can’t remember if it’s the amitriptyline or the Lexprim that makes me feel like that because Iv been taking the Lexprim since last June. 

My memory is so bad I forgot what happened 10 mins ago. My husband says I’m always repeating myself. I have to keep reminders on my phone to remind myself of simple things like feeding the dogs or making lunch for my son!! Things people take for granted. 

I was with my doc about 3 months ago to ask him for another medication to try and he said I have exhausted all treatments. Devastated!! 

He told me to go home and smoke weed! Weed helps a lot but obviously I can’t smoke it and drive or even go to work (I work full time as a social care worker) so have to keep that for night times. 

I was in A&E Monday’s night because when I went to my GP, my heart rate and temperature  was high and I had chest tightness and I was gasping for breath. 

They left me sitting in A&E for 10 hours and then told me It was my fibro causing it!!! Absolute joke. Went back to my doctors and he gave me antibiotics and steroids!

Having this illness is so hard to manage cause every single symptom you have is put down to fibromyalgia. It’s so hard to know if your “actually sick” or if you have just another symptom.  

4 weeks ago I have started to take Triple Omega 3,6,9. Alive women’s energy and recently ( 2 weeks) Tumeric (all food supplements) tablets. I was really good on the Omega and Alive tablets but then started the turmeric and I got a bad flare which I’m going through now. I’m bound to go through my flares but I do question turmeric now obviously. I’m going to keep taking them for awhile and see how it goes. 

I also started yoga 4 weeks ago and it’s brilliant. Don’t get me wrong it’s quite sore but my mental health is much better and my body is getting stronger. 

Sorry hun I’m blabing on now. Try go back on the amitriptyline for another while because you did say it did take the edge off. Unfortunately no treatment will take the pain away trust me Iv tried and tested most and had to deal with the withdrawals and it’s just not worth it. We go through enough symptoms than having that on top of it. 

My advice is

Yoga (for mental and physical health) Omega 3,6,9 and Alive (for good nutrition and brain function) my memory is a little better since Iv started them.

Smoking weed (please don’t drive or go to work, keep it for night times)

Fibromyalgia is a life long illness all we can do is try to stay positive and no our limits (during flares we have minimal limits) listen to your body and your mind telling you to take it easy (so hard sometimes) 

Oh just one more thing CBD oil is also good (contains a tiny bit of cannibis, but no High feeling) totally legal in Ireland and the U.K. anyway. Look it up online. It has a horrible taste but it is pretty good if you get past that. They now sell it in Vape form so you can smoke it (you can get all types of flavors) I’m waiting to get paid to buy some so I’ll keep you updated xx 

Sorry for blabbing on xx 

Gentle hugs and Best wishes 

Victoria xx

4

I am on Amytripytline, Diclofenac gel (cant take it as a tablet) paracetomal fours times a day, coedine and fluoxetine (prozac). I did find the amytriptyline like a sleeping pill for about the first 3 or 4 months but got used to it. The advice about the Ibuprofen is probably sound, I had been told this but during a flare up thought it might boost the effect of the other medications - how wrong was I!!! I was rolling around on the floor with SEVERE stomach pains and vomiting for 3 days, it caused serious inflammation of my stomach lining. Although the coedine is prescribed at quite a high dose, I don't take it unless I'm absolutely desperate, I rarely take it during the day and occasionally take two at night as it definitely helps me sleep and takes a good edge off the pain.

What I have found helps a lot is the high strength Diclofenac gel. You can buy this over the counter although it's pricey. It works loads better than the one I get on prescription. I'm going to ask the doctor if he will prescribe it but I know he will baulk at the price. I was once prescribed it by a locum doctor but when I returned to my normal doctor he said that it was too expensive to prescribe for this condition!!  Hmmm, wonder how he would feel if he had this much pain ALL THE TIME!!!

Anyway, good luck!

5

Hi Chelsey

I am the same with medication but also felt they just did not work for me. So made up my mind to take back my body and came off all medication. My consultant at Pain Clinic was wow..wait a minute you can't do that, but when I explained that I felt worse on them and they made no difference to my pain he then agreed that my body could not deal with the medication. My own doc's reaction was that's what we are here for to throw medication at you and was delighted that I did. Don't get me wrong when it get's so bad I will phone them to get injection of morphin. I can be in bed for up to 5 weeks at a time but I am always exhausted and that's the killer when I don't have a flair up. Tried physio but had to give it up as I was cancelling more appointment's than what I was attending. I now have crutches witch I use when needed. I have been told that Turmeric tablets are good in helping people with fibro...so I am going to give them a try. Finger crossed as we all need something to help us and we will try anything once.

6

Hey David, the doctor has mentioned pregablin but has said that can cause drowsiness too? I don’t mind the drowsiness if it means I can take them when the pain is bad rather than being on an antidepressant for pain that you have to take over time to feel the benefits x

7

Great advice thanks Victoria, I did try the CBD in vape form, it did help to make me feel more relaxed but I think that was when I was on the other meds too so I felt a bit weird with it, should probably try it while I’m not on anything. As for yoga that’s defo something I will give a go, I’ve been gentle swimming which helps at the time but I’m always sore the next day x

8

Too expensive to prescribe for this condition!! I’d have been furious, they really don’t understand the pain we have to go through... my doctor last time asked me if I still have anxiety and if I’m worried about my symptoms, basically trying to dismiss it as being anxious or “in the mind”. There doesn’t seem to be enough understanding of fm x

9

Good on you for trying to go without meds, I’ve found it really hard but I’d rather have my own state of mind than feel the horrible effects of the meds, suppose we have to weigh up what’s best. Will also try the turmeric tablets, thank you x

10

Good luck Chelsey. Got my Turmeric tablets today so fingers crossed. Take care x

11

I have to try the vape I’m going to get it tomorrow when I get paid. Yoga is great but I would be lying if I said I wasn’t sore the next day because I do be. The pain does get a little better after the first week. My mental health was getting so bad I needed to act and yoga does it for me both physically and mentally xx I go to meditation once a week also and that is just brilliant. 

Here is a weird question. Do you feel that your body/mussels are tense sometimes? I notice mine are sometimes and try to relax them it happens very regular. I’m wondering if all people with fibro experiences that?  

12

Yes definitely, I have to sometimes stop and tell myself to just relax! Easier said than done.. but I’m always feeling as though my muscles are so tight and tense. At the minute though I’ve got a really deep shoulder pain on one side, worst it’s ever been but when do you draw the line with Fibro? Like I’m always linking any ache and pain to it, what happens when we’re actually I’ll are we gonna know lol? X

13

I’m questioning that the pain is coming from us tensing so much? Or are we tensing from the pain. Do you take relaxers of any kind? Like valum? It would test my theory?

I know I hate getting sick cause I never know if it’s a flare or if I’m actually sick!! This illness can be a pain in the ass literally 🙄   

14

Be aware, most all FM folks are ultra sensitive to medications. If taken, the lowest dose possible should be utilized- even then, maybe break it in half. Advance slowly. Many providers start on high dosages and FM differs simply cannot tolerate those dosages. 

15

Hi Chelsey, my mother has had great relief with an all natural seed based product. She has suffered with pain along with other symptoms for 30 years and was diagnosed with fibro about 15 years ago. She started taking the supplement in September 2017 and has gone from taking paracetamol every 4 hours on a day she has a lot of pain to only taking a pain killer on two occasions since. 

​The supplement she is taking is a raw natural food product based on cold pressed seeds so it is completely safe. One of the key ingredients is black cumin seed that has hundreds of scientific research papers on it's medicinal properties such as anti-inflammatory and analgesic. It also has D-Ribose which gives sustainable energy and there is some initial scientific research on it's usefulness for fibro and CFS/ME. Based on that black cumin and D-ribose supplements could be an alternative to pharmaceutical drugs.