Anybody out there help please - Fibromyalgia Acti...

Fibromyalgia Action UK

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Anybody out there help please

Pips04
Pips04

Hi I don’t post much but I’m going to try this time and hope somebody out there has similar problems to mine. I’ve got axonal and peripheral neuropathy, a small vessel disease in my brain and osteoarthritis. I’m coping well with these conditions my only problem is my tummy. It’s been 8 years now and my life is ruled by this problem in my tummy. I’ve had mris X-rays, scans, endoscopy you name it I’ve had it but with no result. I’m so fed up with doctors that I just don’t bother anyone anymore. I’m always aware of it, it pulls it hurts the pressure on it makes my copd worse so I’m on two inhalers and it disturbs every action in my life. Previously I had breast cancer which I sailed through until I got a letter from the hospital telling me that Ian Peterson was under investigation for his particular type of surgery. I had a revised mystecomy but it all went wrong. I nearly died but I came out of this with a lot of problems I had ptsd, I was terrified to be alone but I’ve managed to come this far, my cat Pipsqueak has to take a lot of credit. My only serious problem is my tummy, I can’t sleep I can’t relax I can’t wear tight clothing and now I can’t take a shower because it disturbs my tummy when I get into my bath. I apologise that this is a long post but something about today (my Dads anniversary he passed in 1974) pushed me into opening up and I hope I pray that someone out there has similar symptoms and can help me. Thanks guys for listening Mar x

23 Replies

So sorry to here how th drs can’t find what’s causing all this discomfort ,I don’t have fibromyalgia but my daughter does and I have COPD this fibromyalgia causes lots of problems my daughter is waiting for endoscopy and she has irritable bowel I sometimes think she has lupus because that affects different organs in the body I do hope you get this sorted out soon

TakeCare

Dorothy

Pips04
Pips04 in reply to newlands

Thank you I’m praying that somebody out there might be able to help, take care x

Hi Pips04 I’m sorry to hear about all that you have to bear. So hard when your health takes over your life, but Your not alone! Sending gentle hugs and wishing you reduced pain. I have 4 chronic pain conditions and many other things thrown into the mix and I totally relate to pipsqueak and your bond. my cat hashie has been my rock this year! I feel a bit sad saying that but she’s always by my side. At least we are blessed to have our furry ones! I can say my stomach is also always upset, every day nausea, pain, ibs on steroids! And to be honest before I ended up housebound this year due to a back injury on top of everything else. one of my most predominant symptoms for many years was stomach pain. I know it’s a hard slog I also gave up on the Drs finding an answer years ago. I was told I had involuntary seizures and spasms of internal scar tissue from having tumors removed when I was 17. Probably all the medication doesn’t help either, but if you have fibromyalgia could your problem be something similar? I know I get a lot of external spasms so I guess it makes sense to get internal ones! I don’t know, just trying to help as little as I can. I really hope you find an answer, It is so frustrating and scary when you feel so bad without a clear cause, I, along with many others on here truly get it! Wishing you a better day tomorrow X

Pips04
Pips04 in reply to SarahL137

Hi Sarah thank you for replying it sounds similar, I have the nausea, the chronic cramps the pressure and I can only eat once a day otherwise I’m back in bed. Did you feel that your tummy was about to drop out when you ate ? It’s the nearest symptoms to mine that I’ve come across and that eases my mind a bit, take care Pip x

SarahL137
SarahL137 in reply to Pips04

Hi Pip,

I’m pleased that my reply has eased your worries a bit! Yes I do get that feeling, as if it’s about to drop out and you can barely stand up through the pain. All I can do is go lie down. It used to happen all the time before I started to work out triggers for it. Don’t get me wrong I still get it but if I don’t eat certain things it alleviates the level of pain. What’s your diet like? I had to cut out bread and wheat and a few other things. You will be shocked at how much what you eat can effect your pain level - it’s insane! So I would suggest keeping a food diary and doing a food elimination diet, where you start on basics see if there is an improvement and and if so add 1 new food a week etc etc. Lots of stuff on google about it. I hope this helps! But remember Pip, your not alone! It’s not in your head, and you shouldn’t have to feel this way!! Massive gentle hugs, feel free to PM me at any time if your struggling sometimes just having someone to tell that actually understands can feel like a glimmer of light in all the darkness! Take care xxx

Pips04
Pips04 in reply to SarahL137

Omg I’m so happy that you know and had this feeling I don’t mean it in a bad way, what did you take to ease the pain ? hugs xx

SarahL137
SarahL137 in reply to Pips04

😊 To be honest I’m on a lot of medication -as I have a few things going on - and it just slices an edge off my pain. But my painkillers are ; Fentenyl 50mg-75mg Patches, 5mg daily Lorazepam to help muscle spasms, Tramadol 400mg daily, paracetamol 4000mg a day, naproxen 1000mg a day and Amitriptyline 30mg at night. And epidurals in my back got one booked at the hospital on the 1st - also my bestest friend 😀 is a heated throw blanket I purchased from amazon (£40) I think, brown and soft and fluffy but you can literally wrap it around anything that’s hurting and it gets just as, if not hotter than a hot water bottle. You would be shocked at how much comfort it can bring. I also use a tens machine £20 odd at Argos or amazon. Which is good for a short while to distract the pain and also sometimes feels like a massage. Along with a home medic deep tissue massager, (Argos again £40) and several rub in ‘creams’ volteral does nothing for me sake with deep heat or freeze but Holland and Barrett sell a herbal devils claw gel by nature’s garden that seems to give me a little relief. The other thing that might be worth doing is going to the doctor and asking for some IBS medication, I don’t know about you but I’m willling to try anything for even a sliver of relief! Wow sorry for the essay! Take care! Xx

Pips04
Pips04 in reply to SarahL137

Sarah sorry I didn’t read all of your email I got too excited. I have the pain/ discomfort all the time and food does not affect it. I eat once a day only small meals, yogurts and fresh fruit smoothies. That’s why I think it’s so strange x

SarahL137
SarahL137 in reply to Pips04

Have you had your bowel or intestines checked? - I have a friend with chrons disease and they were all the foods she couldn’t eat without pain, all the good for you stuff!! X

Pips04
Pips04 in reply to SarahL137

I’ve had an endoscopy and a colonoscopy, X-rays mri scans etc, and the results were I had a very slow gut ? but no advise from my doctor nothing else. It’s been 7 years and I’m so fed up I’m starving most of the time but can’t eat because if I do I’m in my bed immediately. All I can do is hope for a solution, thank you Sahah I appreciate your support very much, god bless Pips x

Mdaisy
Mdaisy in reply to Pips04

Have you looked into Leaky Gut or SIBO (Small Intestinal Bacteria Growth) ? I have been doing things to help this and eating is more enjoyable now :)

Leaky Gut could be causing things you eat entering your blood stream which is making you feel poorly after eating. if you’ve had lots of antibiotic therapy it also depleted good bacteria. It might be worth looking into helping to strength your gut if you find this is a problem plus have you anything prescribed like Domperidone to help motility? What have the DRs suggested? :)

Pips04
Pips04 in reply to Mdaisy

Thank you any information is helpful I now have a list which I will scream at my doctor next time. Fingers still crossed mind yourself Pip xx

Mdaisy
Mdaisy in reply to Pips04

I am unsure if GPs would discuss Leaky Gut but you can ask, think it’s a relatively new concept that DRs are unsure as to anything to backup this theory whilst some nutritionists will speak of it. Here’s more info on NHS choices that explains more

nhs.uk/conditions/leaky-gut...

You could also read up on SIBO in relation to Candida to see if any symptoms fit with what you are experiencing :)

It is thought looking at these can improve Fibro symptoms but is not thought to be curative . Anything that helps a little though is good isn’t it x

I think you can also get private tests for Candida but unsure if the cost and others although not necessarily considered reliable say before eating/drinking in morning spit into a glass of water. If sinks or floats can tell you might have Candida but as I say not a proper test

I hope some or any of this was helpful

Emma :)

Pips04
Pips04 in reply to Mdaisy

If my doctor doesn’t listen and refer me Daisy I will set up my tent in his office ! I can be quite forceful now it’s been 7 years so enough is enough thank you. I will let you know what happens and do that test but which is it if it sinks or floats ? I’ve no problem in going private I’m happy to spend money to fix me, thank you so much Pip x

Mdaisy
Mdaisy in reply to Pips04

Okie dokie keep us posted - cannot remember re: spit test but info online if you google :)

I'm not sure what the kind of pain is you are trying to explain .. but I sincerely hope that you find some sort of answers in replies here ... one thing for sure someone has the same symptoms and will be able to help .....

Take care of yourself and I hope everything settles soon and you start to feel better ... still come in and chat though to take our mind off things .. it doesn't help to keep your brain active and you actually feel you are in a room full of people ..

All the best

Big hugs

Aud

Could you ask your doctor to refer you to a specialist. I don't know what they are called who would deal with this. Your doctor can not refuse your request to see someone. Explain how miserable this is making you. You have been through a lot. You must be a strong person to survive what you have. Sending big hugs and I hope you get it sorted out.

Pips04
Pips04 in reply to Punkypurple

Hi and thank you I didn’t know how strong I was until all this happened and I have bad days as well but meds and cpd oil help me. I’ve been to neurologist to experts in this field but they tend to think it’s in my head ! my tummy is cold and numb to the touch and this is down to my neuropathy I understand that but it’s the one issue that rules my life now and keeps my indoors. I’ll continue to hope and pray mind yourself Pip x

Have you tried taking a probiotic supplement? This has made a huge difference to my digestive symptoms.

My other suggestion is that your symptoms could be linked to anxiety, you have had so much in your life to increase your levels of anxiety. It is well known that worry triggers a direct response in the stomach.

One of the best ways to control feelings of worry is to learn Yoga breathing techniques. This helps to slow everything down and leaves you feeling relaxed.

I hope one of these suggestions might be helpful to you?

Best wishes

MariLiz

Thank you MariLiz I do take the probiotic yogurts but they don’t make it any easier. I’ll keep trying to find a solution thank you and take care Pip x

Mdaisy
Mdaisy in reply to Pips04

Would need high strength supplements I would imagine than taking the yoghurts - can you speak with a nutritionist if referred maybe they can help & or private allergy testing maybe (if you have the finances) Hope you find the answers soon :)

Hi Pips,

I too struggled with bloating, pain, spasms etc, for years.

I had to wear loose clothes for comfort and to hide my big tummy but I wasn’t particularly over weight.

I saw a very good consultant last year who suggested I try the FODMAP diet.

This identifies certain foods which can irritate the digestion system, eg onions, mushrooms, garlic, dairy and wheat products. ( There’s a long list of foods to avoid or minimise, but those are the most likely to cause problems).

Along with Mebeverine, ( also known as Colofac ), 20 minutes before each meal, my horrible symptoms have been massively reduced- and so has my tummy. I am even wearing jeans again.

Don’t get me wrong, sometimes I break the rules and enjoy an Italian or Indian but I know I’ll pay the price later. But hey, sometimes you’ve got to just go for it!!

There are Food Allergy specialists out there who can test you for all sorts and that might also help you if you discover whether you have allergies or intolerances to certain foodstuffs.

Wishing you the best of improved health

Jan x

Pips04
Pips04 in reply to Bobbassett

Thank you Jan I’ll try it but my tummy is like this all the time every day even if I don’t eat. I have one small meal probiotic yogurts and fresh fruit smoothies. I’m always starving but if I eat I have to lie down so my one meal is at 6pm then bed at 8. It’s 7 years now but I will try getting the Colofac and hope it makes a difference, take care hugs Pip xx

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