concerns about pain meds causing chronic fluid retention

[salamander160]

Hi, I have been taking pregabalin for just over a year now, my weight has rocketed from 14.5 stone to around 17 stone, I don't eat very much, I have no appetite, my Gp has done loads of tests but can't find the reason for it. I was in hospital a few weeks ago, I had to keep asking for pregabalin, the doctors hadn't written it up for me, also codeine, I wasn't given that for about a week. Whilst I was in bed, the fluid retention went down a lot, my legs were in a pretty good shape. Come back home, I hadn't been able to get all my medication from the pharmacist so had to use some 150 mg pregabalin tablets in had been given previously, it seems, the more pregabalin I take, the worse the fluid retention. My stomach is so big, I can barely move, I am scared that if this is allowed to continue, I will become bed ridden and will need 24/hour care and need to be hoisted, as it is, I have had to halve my pregabalin, take control otherwise it will get out of hand. I was at the surgery yesterday, I had to see a Gp about my legs and the swelling, he told me to take more furosemide, I am on 3 tablets all renouned for causing fluid retention, pregabalin, naproxen and fexafenadine. The Gp told me in front of the nurse that both naproxen and pregabalin are bad for fluid retention so I put 2 and 2 together and realised what was causing my swelling. I'd rather have a bit of pain as oposed to becoming so big I can't move. What are the alternatives? I had thought about getting a tems machine or trying natural remodies for pain relief, I need to do something, I am right to be concerned. If the Gp's know these drugs cause swelling, why do they ignore the fact, why do some Gp's deny it? Several doctors have told me it is not likely the medication is causing my swelling. I go to hospital because my legs are very swollen, come home once they are better and it starts all over again. it is no fun! My weight has increased since taking these drugs. What or how do other people cope? I am determined to get this under control with or without the help of my doctors.

[PainConcernHelpline Moderator Community Champion Pain Concern]

Dear Salamander160,

After reading through your post, and seeing how you are struggling, I wonder whether you would find some benefit from contacting the Pain Concern helpline? The number is 0300 102 0162.

In the meantime I will put together some links to some of Pain Concerns resources that will hopefully be of help to you.

You could ask your GP if you could be referred to your local pain clinic.

Best wishes

Pain Concern

[PainConcernHelpline Moderator Community Champion Pain Concern]

Sorry for the delay in sending resources. Just click on the links below.

The Self Navigator tool will help you navigate healthcare appointments

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Here at pain Concern we have several leaflets that are available free to download or in printed format, there are also some really useful podcasts, when you follow the link to the podcast it will take you to a page with a playlist on it, enabling you to pick out the ones that are relevant/of interest to you. There is also a quarterly a quarterly magazine called Pain Matters

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painconcern.org.uk/airing-p...

Our quarterly magazine contains news and features on self-management techniques, pain treatments and personal experiences of living with pain. Print copies of Pain Matters are FREE of charge to anyone living with chronic pain and those who support them.

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The following website has brilliant resources for self-management of pain

my.livewellwithpain.co.uk/r...

Best wishes

Pain Concern

[DENZ01]

Hello I have been taking Pregabalin for about 17 years (300mg twice daily)

I understand your frustration, I used to get severe water retention in my legs.

I started using a recliner chair that elevates my legs & that has helped me.

I can't relate to the Naproxen as I am allergic to NSAISs, but it's the first time I have heard of Naproxen causing water retention (not saying that it's untrue)

As for your GP, you need to get them to speak to you properly about what can be done rather than them discussing it with another member of staff in your presence!

I have to admit that I think Pregabalin is a great help for myself, but you may be able to find an alternative.

My advice would be to definitely discuss it with a medical professional, I'm not too sure about finding a natural remedy rather than the Pregabalin.

While you have been in hospital you said that they didn't give you the Pregabalin, did you not go into withdrawal symptoms?

I really appreciate your frustration and worry, but please try to get your GP to speak to you properly . If they don't listen then ask them to refer you to a pain clinic.

Sorry that I haven't got an alternative answer for you but please don't leave it & worry yourself, speak to the GP urgently.

Best wishes

Karen

[salamander160 in reply to DENZ01]

Hi Karen, the doctor was talking to me but the nurse had to do a dressing change. I spoke to the neurologist yesterday, she agreed that pregabalin does cause water retention so agreed that I should change to gabapentin, I was on that about 3 years ago when I burnt my foot and didn't have the swelling but was very drowsy. The pregabalin does its job but has other side effects and it is these where I struggle. When the hospital didn't give me pregabalin or codeine, I had no side effects but slept a lot. Now that I have had two doctors confirm what I have suspected for some time, I am going to work on it. My neurologist wants to strem line my medication any way.

[hiker2023]

I have been taking pregqabalin for one and half years. 3x75mg capsules. One in morning and two at night. I also supplement with 5mg THC gummies at bed time. I have gained weight but am going to adrss that through diet and exercice. I used to be on gabepentine and did npot have quite the weight loss so may ask about switichng back. You might explore that.

[salamander160 in reply to hiker2023]

Yes I am going back to gabapentin, was on it a few years ago but no swelling but drowsy. Can't have it all ways.

[6bl_brando]

I have been taking pregabalin since it was introduced in the UK, when it replaced gabapentin. I have put on a stone and half mainly on my belly. 'Lyrica' just does it to you. I take a 150 mg dose four times a day.

[salamander160 in reply to 6bl_brando]

Exactly, that's where I have put it on but it is nearly 3 stone and it is getting hard to move around.

[Delboy1]

I agree 100%, I’ve been on Pregabalin for 3yrs and I’ve put in 3 Stone doing exactly the same and eaten the same as I’ve always done.

I also take 4 x150gm a day, however, they do it’s job.

[Optimist24]

I’m so sorry you’re dealing with this. I’ve never taken pregabalin; however gabapentin has a side effect of edema and joint pain/swelling which I suffered from in my elbow and both knees. I was only on it for a total of 6 weeks. I’ve been off for 3 and much of the swelling has been reduced. I hope you find answers soon

[salamander160 in reply to Optimist24]

Hi, yes, I do to as things can't carry on like this, it may not just be one medication causing the fluid retention but they need to help me sort it out.

[Optimist24]

It’s a tough journey for sure but I’m sure you’re persistence will pay off

[salamander160 in reply to Optimist24]

Hi, I don't really have a lot of choice, I can't keep going into hospital every few weeks, it doesn't do any good.

[Optimist24 in reply to salamander160]

Agreed. Your body will thank you for it

[Mitch48]

Hi there,

I’m sorry to hear that you’re struggling.

I was on Pregabalin for 7 weeks some years ago changing from maximum dose Gabapentin for then only cervical spine injuries, I’m usually slim but piled on 1.5 stone in that time without eating extra & regularly then walking everywhere. Pregabalin was touted as the wonder drug with few side effects!!!!

Back to Gabapentin for me & I know it has so many side effects, slowing not only cognitive function but your metabolism, drowsiness etc, etc. When you were sleeping a lot more after going back onto the drug, that’s a big side effect & not only restricted to Gabapentin, I’ve had it with strong opioids, Fentanyl (I do not remember several days when going onto the patches) & Morphine (Oramorph), even Naproxen after a few weeks break.

You mention trying a Tens machine, excellent idea, for me they are the best thing for non drug pain relief, most of the time they help to take away a little of the pain & make it bearable (pins & needles, some burning nerve pain, muscle spasms at first etc) but when I have dragging leg pain, horrendous lightening electric shock pain & severe muscle cramps in my legs/feet etc, I reach for the Oramorph but use it very sparingly.

I also have a hot baths daily, use a foam roller, massage gun, massage machine, electric heat pad & cold gel roll ons such as Biofreeze. You have to do what you can to help reduce your pain including stretching or as I do when possible practice Yoga, just popping more pills or asking for an increase in them is not always the answer. I’m also very positive about pain clinics & the treatments that they offer both to help you physically & psychologically, I have been at this a long time & now in my 19 th year of spinal injuries including my lumbar spine also, a few years ago I had emergency surgery for a rare but potentially catastrophic condition which left me with many additional challenges. I’m still a positive person and am determined that I’m not going to be beaten even by medical conditions that result in severe chronic pain affecting practically my entire body.

Regards,

Mitch.

[salamander160 in reply to Mitch48]

Hi Mitch, Yes, I knew something was causing the swelling, as I have increased it over the last few weeks, the swelling has worsened too, a lot of people don't agree with me but I have had two doctors confirm it in the last week and several people on here have told me they have had a similar problem with pregabalin. I have not increased it but my legs are very swollen and it is very uncomfortable. If you have used a tems machine, perhaps you could guide me, I am visually impaired and need one which is not digital and easy for me to use, i.e. very few buttons. I had gabapentin about 3 years ago, i was drowsy but didn't have quite as much swelling as this, i can't remember exactly, but I had to come off it but after having the amputation, I need something to help with the nerve pain but pregabalin is making things much worse. I take oramorph once in a while and codeine when I need it. As for hot baths, that won't happen until my leg is out of bandage permanently. It has been almost 4 years now. Oh well, watch tis space. Thanks, Adrien

[Mitch48 in reply to salamander160]

Hi Adrien,

Med-Fit do a great range of Tens Machines and offer ones that are more suitable for your needs, a Med - Fit 1 costing £26 is available on Amazon or eBay, I’d only buy one from Med - Fit, they have their own website too, as there are many imitations out there. There are some toggles & dials inside that need setting up for nerve pain (they provide a booklet or card which has the settings on for various types of pain & where to place the electrodes) but once they are done you will only need to use one dial on the top for intensity.

I sleep with one on at night, often with a lead for my legs & one for my arms, I just move them about when the pain moves about.

You could always ask your GP about Duloxetine which is licensed now for pain, I started on 60 mgs many years ago then started taking 120 mgs perhaps for the last 2 years and it helps, I was told that this has very few side effects.

Let us know how you get on please.

Kind Regards,

Mitch

[salamander160 in reply to Mitch48]

I Had duloxatine but it makes me very depressed, I had to come off of it because the signs were too bad, suicidal. I am currently dealking with a skin infection, am waiting for ambulance as it happens, once the infection is cleared up, will be changing from pregabalin to gabapentin. Anyway will be intouch soon.

[Mitch48 in reply to salamander160]

I’m sorry to hear that as it’s used as an anti depressant too. Good luck & keep us updated when you can.

Kind Regards,

Mitch

[hilary1842]

I have been on pregabalin for about 7 years. It was the last nerve pain drug I could try and the doctor said at the time that people either love or hate it. Well I don't suppose he used those words but that is what I took away from the conversation. Fortunately I had non of the side effects you have listed but after taking it for a while at the highest dose I thought it was not working so slowly started withdrawing it of my own volition. I found that at less than150 twice a day I was subject to the peripheral neuropathy I had forgotten I had. So that was the level I was using until I had to change GPs and the new one suggested 300 in the morning and 150 at night.

I am not aware of any side affects. My weight has increased recently but I can attribute that to the amount of chocolate I have been eating as I have been through a very stressful period .

However during the period i have been taking Pregabalin I have become very aware of what certain medications and food additives do to my body. For instance I know that any medication with opium in it: codeine, naproxen, fentanyl, tramadol, etc causes me to have night sweats as though I were have withdrawal. The additive aspartame causes me the symptoms of a UTI but I only found this out from a medication I was prescribed . I no longer get the feeling as though my intestines are on fire although I was not trying to improve that aspect and only realised it was no longer happening.

I have modified my diet by removing wheat and milk and reduced the meat . I am not fanatical and sometimes eat stuff that contains these products but I know what to expect when I do eat them. I try to to eat a diet where the raw products have not been over processed.

Has any of this had any impact on my back pain? No I don't think so but I do feel better. I use pacing and distraction(reading) to have periods where I reduce the pain, until I stand up again. I know if I sit around, in my recliner chairs, I reduce the pain significantly but you cant live like that.

My advice to you would be to keep a food/symptoms diary and see if the symptoms vary with your diet. At the same time experiment with the meds and the combinations and see if there are any improvements .

The doctors don't have all the answers and the meds all impact us differently. List all the differences between home and hospital and try to isolate some for testing. I have found that if you are trying to find your own solutions the doctors will support you. Good luck I hope you can make some improvements.

[salamander160 in reply to hilary1842]

Hi, Yes, I need to do something because the swelling is impacting badly on my health, no appetite, I have to force myself to eat because I feel bloated all the time, constipated, can't uninate, if I do it is very slow. I can attribute a lot of this to my cerebral palsy but not the swelling, that is medication because when I was in hospital recently, they stopped it all, just giiving me what they thought I needed, I had to keep asking for the codeine and pregabalin, it wasn't until I got my niece to ring the hospital, they started to listen. I intend to cut the pregabaline down to 75 mg twice a day from next Saturday, I make up my tablets fortnightly in a doset box, it is easier for me, I will also be cutting the naproxen some more, some of these medications have interactions and my niece found one between naproxen and pregabalin so one of them needs to go. If I had my way, I wouldn't take any medication, I asked my neurologist on Friday about lowering my epilepsy medication, I have not had a seizure for almost 30 years, playing with fire perhaps but hopefully I won't need too much lamotrigine, the neurologist wants to streamline my medication because I am on too many similar drugs. Ok Watch this space, yes my Doctors are ok with me experimenting but I can only change so much as a lot of these drugs are either too small to cut i.e. codeine or capsules pregabalin so can't do any more than I am doing for now.