Medication Combinations

Symptoms & Treatments
1

Hi everyone.

I'm fairly new here, but was diagnosed with fibro in my early 20s (I'm foggy on the specifics, I'm 28 now).

Fibro pretty much robbed me of a very active life 4yrs ago.

I lost a good job, a long term relationship and nearly all of my self-worth.

Living in the UK, the only option left to me for any kind of income was to fight the job center, DWP and that god-forsaken company. ATOS.

I'm tired of fighting them and am desperate to go back to work.

My GP is very supportive but his knowledge is very limited and Rheumatology discharged me without a second thought after they deemed PSA minimal. They didn't even want to discuss the fibro or pain management.

I'm seriously looking for a drug management program that will work well enough to allow me to go back to work even if its only on a part time basis.

I was wondering if any of you would mind sharing which medications you take and how they help you.

For pain I am on multiple stuff. but the main stay is tramadol (zydol) and Co-codamol. with the odd few NSAIDs (Naproxen) thrown in there. Atm its the Volterol gel patches 140mg. which do help but they just don't stay stuck.

My biggest issue is sleep and fatigue, now I'd be lying if I said I didn't experience excruciating pain on most days.

I've been given Gabapentin but even after a single 300mg dose, I hate the way it makes me feel and my GP wants me to get up to 12 tablets a day.

I've tried Lyrica and they were like sugar pills. I've had Topomax as well and Pizotifen for chronic migraine (which thankfully has subsided to a few a month)

I've tried countless anti depressants as I have a long standing history of Major Depressive Disorder and have found very little helps.

I tried duloxetine a while back and had good results but the problem with that was that it was highly addictive and I discovered the horrific withdrawal effects after missing a single dose when I ran out.

Now, I know there are other medications to help with fatigue but I'm unaware of them and apparently so is my GP, other wise I'd have been prescribed them by now.

So any info you lovely people would be willing to share with me I would be most grateful for.

Education is key for managing this rotten condition and I refuse to carry on the way have been for the last 4yrs. Its not living. Its existing, trapped in your own body where you are the only captive.

No one else understands what we go through.

2

I too have suffered from insomnia every night for the past 10 months. I am very sleep deprived and sleep is needed for FM patients to manage their flares and pain. I recently was given Flexeril by my Rheumatologist. It is a muscle relaxant and is non-addictive. I take two 10MG tablets right before I go to bed and I have slept straight through the night for 7-8 hours since I started taking them. I am finally getting some sleep.

I tried Ambien, Melatonin, and a wide variety of other OTC supplements with no luck. Everyone reacts differently to medications but maybe you too can get some sleep with Flexeril. I have found that my CFS (fatigue) gets worse on higher doses of Savella. I had to experiment in order to find the right dose that minimizes my fatigue.

For pain they put me on Savella, but it isn't working very well. Lyrica made me gain 30 lbs in 2 months and Cymbalta just gave me bad dreams so I am also on the hunt for better pain relief.

Good luck!

3

Thank you for sharing your experience Kas.

Yes I've heard that weight gain is a massive issue with a lot of medications for fibro but a few lbs is manageable.

The Pizotifen made me gain almost 20 lbs in two weeks, so it was a definite situation of "No I'm not taking that!" to my GP who actually agreed with me, as I was already very over weight at the time.

Ive since lost a lot of weight, around 100 lbs and feel much better for it. Like most I would like to loose a little bit more and get to an average weight but I'm now comfortable with my weight and its not causing me many issues.

If I have to go back on the Cymbalta, I have to go back on it. I'll just have to be extra vigilant that I don't run out, but considering the hell of a detox I went through to get off it, I'm not keen to go back on it unless I have no other option

It seems that there is little known about fibro and symptom specific treatments unless its pain or sleep.

Atm I have chronic tension in my back and the pain from that has been keeping me awake for long periods.

ive been given a two week course of Diazepam (Valium) for that at 2mg 3 times a day, to relax the muscles. it doesn't seem to be doing much other than making me sleepy, so I only take 1mg during the day if I have to and save 2mg for night time to help with sleep as well. that's fine in the short term, but chronic tension seems to be a recurring issue for me, so looking in to other non-addictive muscle relaxants is priority for my research and treatment options atm.

Again fatigue is a big issue.

even if I have managed to sleep quite well for a good period.

I find it incredibly hard to get to sleep in the first place and then its the same battle to wake up.

with the fatigue as well when its bad I can sleep 22hrs out of 24 and cant stay awake for love nor money.

I'm finding that the common denominator for fibro is sleep issues. Sleep seems to be key in managing both pain and fatigue but so is relaxation.

I cannot afford acupuncture or massage or even hot stone therapy. the closest I get to any of that is a hot shower or bath followed by a hot water bottle of wheat bag, with essential oils in the vaporizer and a joint.

Yes, I mentioned that controversial alternative therapy, Cannabis. Some times it helps and some times it doesn't but its highly variable as there is no reliable way of know what you can obtain at the time. I only ever get it from people I trust and smoke from their own stock. if they wont smoke it themselves, I question why and think is better just to go without than get a bad batch. Simply because its illegal here. I hate sneaking around under the radar just to get some relief but its helped me where a lot of prescription medications haven't, and it was on the recommendation of a rheumatologist "OFF RECORD" lol

I wish you much luck in finding what will work for you Kas. :)

4

Hey Lovett,

Not a problem. It seems to be a question that a lot of us have that turns up few answers:

HOW DO WE TACKLE FATIGUE?

The answers are usually, get more sleep (Duuuuuuuuh!!) change your diet, exercise more and take vitamins. All of which are usually the first things we do. But when those fail, what then?

I feel I could probably fight through the pain with my pain meds if it wasn't so damn exhausting and I wasn't so fatigued in the first place. Today I didnt wake up until 1.30pm and was so angry, but on the other hand, I had slept pretty well, what little sleep I did get. I always sleep better in the mornings. so it wasn't really right to be angry with myself for doing what my body needed me to do.

But diet and exercise made no changes for the better for me. On the subject of vitamins, Im moderately deficient in D and have been for a long time.

Ive tried encorporating more Vit D rich foods into my diet and getting a bit more sun, and taking suppliments but it makes very little difference so I will speak to my gp next week about D and B vits.

:) Thank you for your reply and the warm welcome. I hope to share what I know with others as well as learn from others and we wont learn anything unless we ask the questions :)

5

Hello from the southern US :-)

I will quickly tell you my experience and I hope it helps even a little. Six years ago I became ill with viral meningitis. After a short hospital stay and almost a month recovering at home, I thought the worst was behind me. Guess again! I became ill with Epstein-Barr virus which caused mononucleosis. This at age 39! It was a year after that that I began to experience muscle and joint pain, fatigue, sleep problems, headaches and the list goes on and on. So fast forward 2years and I'm diagnosed with auto immune disease, Fibro, depression and anxiety, and of course insomnia. Most recently I found out I've been dealing with sleep apnea also. What you say about fatigue and being able to sleep 22 out of 24 hours really rang true with me. Thankfully, treating my sleep apnea is helping quite a bit with the fatigue. As far as meds, I take lyrica (Fibro) plaquenil(auto immune), hydrocodone 5/325(pain) pristiq(anti-depressant),ansaid(anti inflammatory),temazapan (sleep). I haven't been able to work in over 2years.

We're here to listen and hopefully help. We get it.

6

I too have a huge INSOMNIA issue, I am working really hard to try to get it under control. I am trying to cut out caffeine (I never really had caffeine after noon but I still do drink caffeinated products daily am to get going). Nothing medication wise has helped, not Flexeril or any OTC sleep agent, my MD didn't want to do sleep meds and honestly years ago none of them worked for me.

Regarding the Gabapentin, I was super hesitant to try it as I took it years ago and it made me super foggy. So my MD started me on just 100mg at night. I am really slowly increasing and now take 100mg in the am, 100mg in the afternoon, and 200mg at night. Amazingly, I actually do think it is helping somewhat, at least with fatigue feeling (I still am not sleeping well but am not as fatigued) and also a little with my mood. I didn't really feel depressed before but I can tell a difference now and seem to feel a little happier overall. I also added vitamin B12 about a month ago and I think that is helping with the fatigue and keeping my brain a little clearer.

Unfortunately there isn't a "one size fits all" solution to this wonderful (sarcastically) illness. I think for me I just will always keep trying new things if something stops working for me. Hugs.

7

I am taking Cymbalta 60MG for pain and that was an instant relief... took it one day and the next I noticed a huge decrease in my pain. BUT it seemed to keep me awake. I did not have an issue with going to sleep before my problem was I slept all the time... I was always tired and could sleep on command! LOL The Cymbalta made me wake up continuously through the night... so my Dr put me on TRAZODONE...BAM I was sleeping through the whole night.

My Rheumy put me on Nourotin. I started out with 300 MG 3 times a day for 2 weeks then went to 600MG 3 times a day... now when I first started taking this...oh man...lol... I was LOOPY. I continued to take it and that eventually stopped.

Last night I tried to go to bed only taking 50MG of the trazodone instead of the 100mg... well I tossed and turned through the night...I sleep with a pillow over my head and woke up and it was gone. when I got up this morning I found it on the floor...lol O.K. I know you are wondering why I sleep with a pillow over my head... well hubby has to have noisy to sleep... so we have 2 air purifiers, the ceiling fan and a box fan running in our room... My ears hurt... so I muffle the sound.

I believe once you find the right combination you will find some relief but... I also believe that our bodies become used to the meds and then they do not work as well... then you are on the hunt for something else to help... it is a never ending cycle.

Huggs, Belinda