Could my pain and ongoing symptoms be... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Could my pain and ongoing symptoms be Fibromyalgia?

gimmestrength
gimmestrength

Hi just looking for some advice/reassurance.

Here’s a brief history/symptoms:

I have a paternal aunt and great grandmother with fibromyalgia.

My biggest pain which has been going on now for months has been sore/tender ribs to touch. Mainly right side. Bottom of ribs, going round to side and back. Feels like something is stuck underneath rib cage. Nothing relieves the sensation. I do have a gallbladder polyp but consultant says shouldn’t be causing me problems as so small. Could this be Fibromyalgia?

I have alway had problems with painful periods and intercourse and was treated for endometriosis. I had my son through IVF. We had a traumatic birth resulting in Emergency Caesarean and a premature baby with time in NCIU. Could this have been a Fibromyalgia trigger as pain has only been worse since with new symptoms.

I get regular headaches (squeezing pain on scalp sometimes) otherwise front and back of head and neck. I get itchy eyes, ears and scalp occasionally. Sometimes crawly sensation in lower arms and legs.

I’m always tired. Sometimes sleep is easy and I find I just want to sleep all the time but never feel refreshed. Other times I can’t sleep at all.

I have had tingly feet and hands and also a weird burning feeling in my right thigh. Felt more to be surface of skin rather than deep feeling.

I have trouble passing stools. I have started to take laxatives as I thought maybe my rib pain could be due to constipation . Turns out even with laxatives my rib pain is still there and I still find it hard to go to the toilet. I sometimes feel nauseous too.

I have constant aching and tender shoulders, base of head, back of neck and upper back. Sometimes my arms ache when reaching up or stretching out.

My GP has referred me to a Rheumatologist but I have a wait of over 6 months!! In the mean time he has prescribed Amitriptyline which I am yet to take. I’ve had bad reactions to pain killers in the past so am nervous about taking them being a single mum with a toddler incase I react.

I have anxiety relating to trusting doctors as I feel like I have never been ‘cured’ or pain free as nothing seems to work. They have said that all my pain is due to anxiety. Even though when I was on antidepressants I still had pain! I can’t get them to understand that the reason I am anxious and depressed is because I’m in real pain all the time!!!

They have sent me for blood tests, scans, X-rays which have all come back clear. I’m worried they are missing something more sinister as they are reluctant to repeat these tests, even though they were done months ago! My pain is only getting worse!

All I am asking for is a bit of reassurance that I’m not seriously ill. I would like them to say you have ‘this’ (whatever it may be) and I could deal with the pain and outcome! I can’t continue to not know!!!

Do my symptoms and feelings seem relative to fibromyalgia? I never know what website to read or what to believe!

Any help, reassurance/advice will be greatly appreciated :)

17 Replies
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Hang in there it does sound very much like fibromyalgia. Good luck x

Thank you 😊 x

It might be a good idea to get the C section scar treated by a Scarworker as trained by Jan Trewartha or Sharon Wheeler. I’m not sure if you can find one near you on a standard search, if not I can access our closed group and ask if there is anyone near you, if you PM me. (I’m a Scarworker but not practicing at the moment.)

Have you looked at the work of the late, great Dr John Lowe? He links fibromyalgia to low thyroid hormones, particularly T3.

gimmestrength
gimmestrength in reply to penny

Thank you for your comment. If things continue I may possibly look into that. It’s not so much my scar area that causes me pain but could be linked I suppose x

I got diagnosed 2017 , with fibromyalgia . And. My symptoms are so bad some days I can’t even lift my head of the pillow , so I just sleep , can’t walk and the pains in my leg neck head just unbearable. I have seen consultants had tests , what I have found to help me, is eat Gluten free pasta , bread , Lactose milk , I take god liver oil ,turmeric magnesium , and vitamin D 1000 mg that the doctor prescribed to me , And folic acid . And my tablets I take Topiramate 200mg felt so much better taking them then any other tablets . Are used to take pre-Gabalin absolutely useless ,? Ask for these . Come of Amitpyline They can make you bit tied and dopey, to control your bowls have natural yoghurt in the morning with natural fruit put it in a neutral bullet liquidise it and drink it and it will make you start going. Lunch 🥗 green think fibre. Snacks nuts , carrots Houmous, exercise walking swimming. Good luck give it 6 weeks your feel different women . Keep moving that my advice don’t let it beat you. Xxx

Good to know that a change of diet has helped you. I will definitely make some changes and see how I get on. Thank you 😊 x

It does seem Fibro- like, and your doctor has referred you to Rheumatology, which is the most common way to get a Fibro Diagnosis. 6 months may seem a long time, but it took 20 years for me to get a diagnosis. Things have improved tremendously since then, even with Covid in the mix!

Cheers, Midori

gimmestrength
gimmestrength in reply to Midori

Aww glad to hear things are better. Thanks for your comment x

Hello, sounds like fibro to me and also peri-menopause symptoms. Mine both started when I was 43 at the same time - menopause 3 years ago. I was on amitriptylene for 8 years or so (antidepressant) and came off (cold turkey for 3 months and was awful) because my heart rate had increased and bad eye problems; plus, constant dry mouth. I changed my diet - gluten/dairy free plus greatly restricted my sugar intake; no tea/coffee/alcohol/soda drinks. I walk my dog twice a day but also got a treadmill - would suggest gentle exercises eg. Swimming/walking/yoga/meditation. Don't push yourself to hard each day or you may suffer more pain. I have a homemade smoothie every morning and try to eat plenty of veg to keep my bowels running - a daily probiotic is good. I take a multivitamin daily and two paracetamol every evening for the pain - otherwise no other meds including HRT because my body reacts badly. I try to think positively because its the only way to live with this awful condition. Any questions please ask. Take care:)

gimmestrength
gimmestrength in reply to caico

Thank you for your comment. I will defined try the change of diet. I do have a sweet tooth but also eat pretty balance diet other than the odd biscuit here and there 🤣 xx

penny
penny in reply to gimmestrength

Scar tissue is extremely strong and can distort the skeleton; it is adhered fascia which is stronger than muscle. Abdominal scars are the worst for affecting the whole body negatively; think of pulling one corner of a towel and see the lines of stress radiate out.; that is a scar distorting fascia.

gimmestrength
gimmestrength in reply to penny

Thank you that is a good way of explaining it. Things have definitely got worse since my c-section x

penny
penny in reply to gimmestrength

Unless your scar is treated you would get worse, as night follows day. Very few health professionals understand the need to work on a scar once it has healed.

it sounds like fibromyalgia...i’m having the trouble with my ribs too. i was convinced i had a hernia just under my ribs but nothing showed. they said it’s my muscles that are weak and that’s what’s giving me the feeling of a lump inside and the ache in ribs is due to the fibro. i take amitryptiline and tramadol and pregablin which help me sleep. i am ok during the day some days i feel better than others. once you get the right dosage and mix of painkillers or even paracetamol you’ll be able to live better than ow. try not to think of worse case scenario. i keep a happy outlook and live fairly normal despite being in pain all over my body. the amitrptiline definitely help with your mood . try and find a local fibromyalgia support group online, it will be a big help for you. i hope this helps a bit and you and your wee family have a wonderful life x

Thank you for your comment. Much appreciated xx

Hi - a lot of the pains you've described sound like a good osteopath or acupressurist could help, like they did me with mine. And yes, I also think most sound like fibro. If they've checked everything once although you had the pains, then I wouldn't do them again, unless I was pretty sure what it was. To do this I would go to another doc for a second opinion, which I've done pretty often, and was very helpful (only then did I get the fibro-diagnosis, for instance). But I would carry on looking for new possibilities/reasons, to exclude everything which a doc thinks it might be.

And like you say, I wouldn't put things down to anxiety. But I would do something *about the anxiety, like counseling.

At the same time I wouldn't be satisfied with the diagnosis 'fibro', because it's still a very difficult life, even tho you don't die from it or end in a wheelchair. So I'd look for things/treatments which will get the symptoms down. I pinpoint the symptoms, analyze them, look and ask docs and therapists for ideas to get them down. Some of your pains for instance could get better with a different mattress, like ribs, tingling (from back/spine?) and thighs: My thigh problems got better when I put a soft topper on mine.

Psyllium is something that helps the gut both ways, naturally: Normally it is taken with a lot of water and acts as a laxative, I take it with only a little bit of water to prevent diarrhea.

I used amitriptyline for 4 months for better sleep, until I realized I had 8 adverse effects from it. When I weaned it off I realized I had just as good/bad sleep, but was less drowsy in the daytime, all the side effects went away but the only effect wasn't even there any more. So if you consider using it, don't do it too long and watch for the many side effects.

I have a really high tolerance for painkillers, so they only take the edge off excruciating pain which keeps me awake, but amitriptyline has been useful in helping to reduce intensity of depression which in turn makes me more anxious to sleep.

I haven't had side-effects except a bit of diarrhea and a constant but dull headache when I first began taking it.

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