Hi, this is the first time writing on here for my fibromyalgia. For about a year I was treated for PMR and the relief from the steroids was initially amazing but I couldn't taper due to my pain increasing. Seen by Rheumatologist who said it was not PMR and was Fibromyalgia so had to come off steroids which took some time then obviously the pain returned and is unbearable at times and now unable to work and somedays cannot even get out of bed. Also had MRI to my spine which identified sacroiliitis and degenerative disc disease. I started Naproxen which didn't help and my doctor insisted I stop them and give in to taking Pregabalin which Is the only medication I now take to treat not only my overall body pain but my spine issues also. I also use paracetamol.
This was really my question as I feel I have just been left in pain where the miracle drug is not working and even though I have increased it as recommended it is not touching my pain. The doctor tells me to persevere and keep increasing it but if it's not working now what good will that do. I suppose one lucky aspect is I have not experienced side effects.
Has Pregabalin been effective for anyone else? has anyone got relief from any other form of medication?
I need to believe that there is something more that can be done. I have always been a positive and proactive person so this is why I am seeking advice to see if there is anything I am missing.
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Cooper02
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Thank you for sharing your experience and reaching out for advice. First of all, I hope you’re doing okay. Living with chronic pain and dealing with the limitations it brings can be overwhelming, but it’s important to remember that you’re not alone, and there are steps you can take to explore new options and find better management for your symptoms.
1. Your Current Situation
From what you’ve shared, you are currently dealing with:
Fibromyalgia, which causes widespread pain that often doesn’t respond well to a single treatment.
Sacroiliitis and degenerative disc disease, contributing to back pain and mobility limitations.
You mentioned that your current treatment plan doesn’t seem to be providing the expected relief. It’s common for people with chronic pain conditions to experience a reduction in the effectiveness of treatments over time, as the body can adapt to them.
2. Alternatives to Consider
If your current treatments are not working as expected, there are other approaches worth discussing with your doctor:
a. Neuropathic Pain Management:
There are other medications or combinations that can target nerve pain, which your doctor may consider.
b. Inflammatory Pain Treatments:
If previous treatments for inflammation were not effective, a specialist might recommend targeted therapies for inflammatory conditions.
c. Combined Approaches:
Sometimes, combining different treatments at lower doses can target pain more effectively while minimizing side effects.
It’s essential to discuss with your doctor to tailor a plan that better suits your needs.
3. Non-Medication Treatments for Chronic Pain
Alongside medications, other strategies can be highly effective for managing chronic pain. These include:
a. Physical Therapies:
Physiotherapy: Exercises to improve mobility and reduce pain.
Hydrotherapy: Therapy in warm water can help reduce strain and alleviate muscle pain.
b. Psychological Therapies:
Cognitive Behavioural Therapy (CBT): Helps manage the emotional impact of chronic pain and provides practical coping techniques.
c. Complementary Treatments:
Acupuncture: Some people find relief through this.
Mindfulness and Meditation: Techniques to reduce the perception of pain.
4. What to Do if Your Treatment Is Losing Effectiveness
Steps to Take:
5. Discuss Your Current Treatment with Your Doctor:
Let them know that it initially helped but now seems less effective. This feedback is crucial to adjust the plan.
6. Request a Comprehensive Treatment Review:
Consider seeing a pain management specialist or rheumatologist for additional options.
7. Explore Specialist Pain Management Programmes:
These often combine medication, physiotherapy, and psychological support for a more comprehensive approach.
8. Conclusion:
If your current treatments aren’t providing sufficient relief, it may be time to revisit your treatment plan and explore alternative strategies. Chronic pain management often requires a tailored, multidisciplinary approach. Speak with your doctor or request a referral to a specialist to find the best solution for your needs.
If you have further questions or would like to share your experiences, feel free to ask in the group. There’s always someone ready to offer advice or support. Wishing you the strength to keep pushing forward, and I hope you find the relief you need soon!👍🙏💪
Thank you so much for your response. I think my main problem is I feel alone in this journey. Although I have a very supportive family, they unfortunately can't make the pain go away or make suggestions to help me and they feel useless which makes me sad.
My doctor tells me to persevere with current treatment plan. She did refer me to pain clinic who declined to see me and recommended a pain specialist. My doctor has not yet made this referral. I am also waiting for a MSK appointment which to date hasn't happened. G.P advised against physio at this time due to getting pain under control.
My doctor is ringing me again on the 10th Dec and to be honest I dot really think she knows what to do with me and is going by the suggestion from the rheumatologist to start the pregabalin. This is the only recommendation she has made. My Rheumatogist discharged me in to the care of my G.P!
I have tried the swimming pool but could not climb the stairs to get in and out of the pool which is a daily struggle at home.
I have tried CBT and did not feel it was helping and discontinued this although I am waiting to see a therapist which may help.
I believe I could cope with just my fibromialgia if I didn't have the spinal disc degeneration and sacroliliitis, this is what I feel my doctor is failing to treat and the area which is most painful and debilitating. I don't believe the Pregabalin is helping my physical pain from these areas or my fibromyalgia.
I have been a nurse all my working life and my belief and in practice, nobody should be left in pain and pain is what the patient says it is. Being on this side of the fence where I am in so much pain every day and I feel unheard is frustrating and makes me feel despndent.
I will try again to contact my G.P and chase the referrals and go from there. I will also ask for a Comprehensive Treatment Review and be more assertive I think.
Thank you for your response. I have looked at the Flippin website and will definitely spend time reading through all the information. I don't know it its the fibromyalgia but I don't feel the cold which is new for me but do find additional heat in heat pads and an electric blanket helpful. I too have long nights where I am awake (Usually pain related) and I need to remember that I am not alone.
🤗 ur definitely not alone. When I read that people feel alone it makes me 😢. I've been up since two am in pain. After being told to reduce the steroids for Pmr the pain has really kicked back in. Also my mood has plummeted. I keep bursting into tears.But reading the posts here has made me feel much less alone. Your positivity is heart warming and I send love and hugs Dawn😍🤗
It is recommended you try going to the highest appropriate dose of a medication before you move on and try another. If don't do this and later seek help from a pain specialist they may make you go back and try drugs like Pregablin again.It is common for patients to give up on a drug before a dose that is most efficacious has been tried and then erroneously conclude that medication doesn't work for them. These things take time and building up to a correct t dose can take longer than we want. It doesn't necessarily mean it's not going to work for you.
Having said all that, Fibromyalgia is a condition that is known to be unresponsive to pain medications which is why many of us do not take any medications for our Fibromyalgia.
Thank you for your response. I will persevere with the pregabalin as this is my only treatment. I am waiting for my G.P to refer to the pain specialist as she initially referred me to pain clinic and they declined to see me.
The pain specialist is someone I am so eager to see as my G.P is is restrictive with her approach to my pain management. I have pain from degeneration to spine and sacroiliac joints as well as fibromialgia and she stopped my Naproxen rather than find a stronger NSAID to treat my Muscular skeletal pain.
I was interested to find out if those who take pregabalin have had a positive response in treating their fibromyalgia but it is interesting that you said that often fibromyalgia can be unresponsive to pain medications. Maybe this is the reason it has had no impact on my overall pain at all.
Yes the NICE guidance for Fibromyalgia changed relatively recently because it has been recognised that long term painkillers are often ineffective and can do more harm than good in the long run. Naproxen being a good case in point, I know someone whose stomach was severely damaged by Naproxen use, people can also develop kidney problems. If you have a chronic pain disease it is unrealistic to expect to be able to life without pain I'm afraid although we always chase the possibility!
Now NICE recommend antidepressants, talking therapy and exercise for the treatment of fibromyalgia. I can't get talking therapy and anti-depressants didn't work on me so I just use exercise. Before the guidance changed I was put on a lot of different painkiller type meds, Opioids don't work on me either so Morphine was no help, I tried Pregablin and Gabapentin for a few years but ultimately, after withdrawal, my pain levels remained the same whether I was on or off them.
That's another reason some people believe painkillers do help is bc when they come off them they get withdrawal so they feel worse and they think its bc the painkillers were working but actually if they just wait and get through the withdrawal they'll realise their general pain levels haven't changed.
I did eventually get sent to a pain clinic but this was only after 20 years and over 20 failed treatments. I have several other chronic conditions, 4 of which are pain disorders. So the clinic may have refused the referral on the basis that not enough standard treatments have been tried through your GP practise, also not being on high enough doses is something they don't like bc the GP should be managing that.
The pain clinic is supposed to be the end of the line really, they are there to help people who have to learn to live with pain that won't go away. You get mindfulness courses and the like, so the pain clinic is unlikely to get rid of much pain for you anyway.
I have tried all the medications and none of them have worked so I just tried certain pain killers off the shelf numoural worked for a while then I tried liquid ibuprofen that was the same I’m going back to the doctors to see what they say as I don’t get any sleep and no relief from pain hope you have better luck but everyone is different hope this helps
Thank you for your response. I am so sorry to hear that you are also struggling to manage your pain and I can definitely relate to medications not working. I am going to persevere with the Pregabalin as recommended and hopefully get my referral to pain specialist. There must be something that can actually help us.
Sometimes I wonder if it’s something else if nothing works that’s what I think physio helped the stiffness a little I can move my neck better than I did at the start of it I’m on amptrypiline 10mg nearly finished no effect so far or side effects
Thank you for your response. My G.P was reluctant for me to be referred to physio and said I needed to get my pain under control first. Maybe I should self refer as stiffness is definitly a major problem especially in bed at night and in the morning when the worst pain gets to me. Unfortunately I am allergic to Amitriptyline.
Naproxen did absolutely nothing for me too however I did have really good pain relief with another NSAID. Though long term use is not ideal, most are not so kind to the kidneys and other organs 🫤
Agree with other replies, finding meds that help can take a long time of trial & error, usually a mix of at least 2 or 3 rather than just 1 and then over time as your body gets used to them you may need to increase dosage for the same effect.
I would definitely speak to your GP again though, perhaps adding in another drug such as Amitriptyline or trying another NSAID would be helpful. Obviously I'm not medically trained so only going on my own very limited experience.
Of course, it was Arcoxia 90 mg (Etoricoxib) and just noticed it's actually classed as a Cox-2 inhibitor rather than an NSAID when I checked for spelling 🙄 No idea what the difference is though
Hello and welcome, has it gone on your medical records that Rheumatologist has said it’s Fibro ? I am a lady of similar age so like others I can relate too pain , I take one tablet of duloxtene 60mg at night but also works for anxiety which I got when being diagnosed with Fibro /Cfs , it works very well for that , Doc gave me Codiene too take on the most painful days which again took pain off for a couple of hours. But most recently I found ibuprofen 400mg tablet from my local chemist , you can only take 3 in a 24hrs period as the tablet is stronger and I’ve found this more effective , I try not too take it daily, more so if I’m resting like the weekends and doing my usual daily chores. You sound very positive and trying too keep active , I do find my mental well being is postive when I can do more, not at work either.i do hope you find the forum helpful x
Thank you for your response. Yes the Rheumatologist has recorded it on my medical notes that I have fibromyalgia and this is on my current medical history with my G.P. My G.P would only give me Pregabalin and stopped my Naproxen which wasn't working. I take paracetamol but was told not to take NSAIDs with the pregabalin so restricted what other medications I can source.
I agree that I feel better when I can do something positive but often the implications is that it increases my pain and I get exhausted. I am always thankful for Netflix and amazon prime. The positivity I get is watching stuff that makes me laugh. I agree that the forum is helpful and I am thankful that there are people that understand
Not sure where you are based but it may help to request a referral to one of the dedicated fibro clinics. I went to the one at Guys and St Thomas's. One time appointment where you see several different specialists and they will discuss a plan of action with you and send it to your GP for action.
Just being listened to and the acknowledgement of the pain and suffering we are experiencing was such a relief for me.
I did have to fight to get the referral but eventually managed it by requesting it in writing so that it formed part of my notes. Verbal requests often are not recorded. I followed the letter up with a telephone consult and finally got the desired referral. Maybe worth a try for you too. Good luck
Hi cooper02So sorry rry to hear about your current situation... it took me 10yrs to get the right combination of medications [ I had a pharmacy background so researched everything once diagnosed with FMR] I know Dr's are limiting opioid options but I literally wouldn't get het out of bed without them! I was on Tramadol & Duloxetine [ licenced for FMR!] before pregabalin was added in & was a game changer for the nerve pain opiods don't touch! However for the general aches pains throbing muscle pains Tramadol & paracetamol do the job enough that I have the occasional good day! Best if luck ♡
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