fibro and costocondrities

[mandyscott1974]

just looking for some advice I've been reffered to a chronic pain clinic yet again as last time my gp said he did the want me going when hospital a and e last said they wanted me going but now I've moved I'm with a new gp just wounder if anyone can tell me what happens when you go thank you also can I ask does anyone know if fibro can also effect your lower stomach having stomach scan this morning but just curious thank you all for anyour advice xx

[misty14]

Hi Mandyscott

Good luck for your stomach scan. Fibro can affect your gut , giving IBS like symptoms, pain, diorrhea etc!. Have you been suffering this way?.

I go to a pain clinic and what happens is your assessed by a member of the team who decides which treatment path is best to take!. They offer several different ways of treating pain. Gentle physio, injections/ look at pills with the Consuktant and a pain management program where you learn new coping skills and meet other sufferers!. That's good to find your not alone!. I've made new friends doing this!. I've had a lot of help from my pain clinic and continue to go so I hope they help you.

Good luck and keep us posted. X

[mandyscott1974 in reply to misty14]

thank you so much for your advice and will be nice to meet others also I do suffer with ibd so wounder if that's what it is xx

[Mary-intussuception in reply to mandyscott1974]

IBD - is that Colitis or Chrohn's you have Mandy? Or are you still under investigation (hence the scan). You must be under Gastroenterologist then? Have you ever had blood tests to check for Coeliac Disease? Thyroid Function? Ask for Thyroid Antibodies (TPO and Tg ) if you haven't had them yet, as well as full TFTs.

I don't have IBD but do have a number of stomach, intestinal & Colorectal conditions.

My experience of our Pain Clinic wasn't a very positive one but I hear of others who have benefited from theirs. So hope you get a good Consultant and he/she can help you.

There is someone on this community forum who has Fibro, IBD (Chrohns) and Hypothyroidism, I've 'met'. So you are in good company.

Other blood tests you may wish to ask for are : Vitamin D, Calcium, B12, Folate and Ferritin. You may have had some done, but don't be shy about asking. You may be deficient in some of these and therefore benefit from prescribed supplements.

A Rheumatologist once put all my symptoms down to my Fibromyalgia but his diagnosis was 'old' news as I was told decades earlier that I have Fibrositis, although I didn't fully understand what it was at the time. It's the old name for Fibromyalgia.

Since then I have been also formally diagnosed with :

Hashimoto's Autoimmune Thyroiditis & Hypothyroidism

And also

Lympthoedema

Although I have known I had these for many years.

All the best for a good and helpful Pain Clinic experience. xx

[mandyscott1974 in reply to Mary-intussuception]

bless yah man and I have e collitis but others say proctitis had thyroid tested I have low thyroid but don'tneed medication my gp said just bloods evey 6 mth hun xx

[Mary-intussuception in reply to mandyscott1974]

Yes. You DO need Thyroid medication.

And you need blood tests every 6 WEEKS initially - not months!

Could you get a copy of all your blood tests (a print out) with full information including normal ranges in brackets, comments and dates of tests and put on here for comment or put in a new post over on the Thyroid forum?

Ask your GP for an Urgent referal to an Endocrinologist.

Also ask for the Thyroid Antibodies blood tests - TPO and Tg.

AND the nutrients levels.

Also ask for tests to check your Adrenal Function first, before you start Thyroid medication (Levothyroxine )

Let's know how you get on.

xx🐥

[mandyscott1974 in reply to Mary-intussuception]

all they. keep doing is a full blood count then when found out I had low thyroid they just kept testing my thyroid levels and keep.saying its not low enough to need Meds but I've always thought different tbh I'll see my gp on the 12th and ask her as I. at new docs now due to house move thank you so much I'll let u know what she says xxx

[Mary-intussuception in reply to mandyscott1974]

Ask your GP to refer you urgently to an Endocrinologist due to your symptoms of Hypothyroidism.

Ask GP to do blood test to check Thyroid Antibodies TPO and Tg.

Also the nutrients levels already mentioned -

Vitamin D

Calcium

B12 and Folate

Ferritin.

Write a list in case you forget when in with GP. Just politely but firmly say this is what you are asking for. Write a list of symptoms too. Or print list from Thyroid UK site and tick them off.

It is so annoying when they put people on antidepressants when sometimes all they need is their Thyroid treated.

It's difficult to comment on yours without seeing the blood tests results. If you can get a print out of your blood results with the full info - dates of tests, numbers and normal ranges in brackets and any comments. That would be helpful.

The Thyroid Antibodies will show if you have Hashimoto's Autoimmune Thyroiditis which causes Hypothyroidism in most cases. But, with Hashimoto's regular Thyroid Function Tests results can fluctuate. Mine were reported as normal after I'd had abnormal (Hypothyroid) results that no one told me about. So I was late diagnosed and treated. I felt I wasn't being listened to /believed by GPs also.

You also need tests to check your Adrenal function so ask about this too.

Do you have any problems with your throat? Neck?

Take your temperature early morning and make a note if it's low (below 36.5) and add to your list of symptoms.

xx

[misty14 in reply to mandyscott1974]

Hi Mandyscott

Sorry you suffer with IBD. Which one do you have?. I have UC. It's a lot to cope with isn't it?. Good luck for the scan. X

[mandyscott1974 in reply to misty14]

bless yah I have collitis hun that'why I like these groups ppl understand xx

[Mary-intussuception in reply to mandyscott1974]

reply 3

Mandy

I've just looked over your other posts. You have so many symptoms of Underactive Thyroid /Hypothyroidism.

Is there another GP at the practice that you can see? Is there anyone you can take with you for a bit of support?

You need to get your Adrenals checked then start on 50mcg Levothyroxine as soon as possible.

Keep on pestering GP until you do.

[mandyscott1974 in reply to Mary-intussuception]

see now I thought this also hun I'm. the my gp on the 12th January she is new I'll ask her about it thank you docs just seem too not be bothered at times I'm. sure they think I'm lying to them xx

[misty14 in reply to mandyscott1974]

It's horrible isn't it , Mandyscott having colitis too!. What treatment are you on for it?. So agree about benefits of forum and sharing!. Good luck tomorrow. X

[mandyscott1974 in reply to misty14]

I'm on prednisone foam for it twice a day had alsorts of diffrent things for it but keeps flailing up now and then it's horrible and scary I'm one of these who always thinks the worst to at docs on the 12th and hoping to get more answers about things were ppl at the end of the day and all we are to them is a number does yours effect u alot see not been crude when I go for a poo still getting lots of bright red blood and get scared by it but also get constipated alot to so could bee that also xxx

[misty14 in reply to mandyscott1974]

Hi Mandyscott, you've just described me at the mo with mine!. I'm doing twice a day pred foam and waiting to hear from Gastro about a possible colonoscopy!. Don't we love those?. Do you get a lot of pain?. That's been a big problem for me recently. I'm heartened that you get constipatedtoo as I do and didn't think it was a feature of IBD. I hate the bleeding , did learn that bright red is better as it shows its fresh, less worrying apparently!.It could be piles for you specially if the pred foam hasn't stopped it happening. I find it does for me! There's always something to worry about!. Hope today goes well and you get help and answers from it. Have you got a follow up appt with Gastro?. X

[mandyscott1974 in reply to misty14]

hiya bless yah but nice to talk to.someone in the same boat as yourself I dot havery a follow up but got told when flares up got to keep using the moose till it calms down again against yes I sufree alot of pain I try hot water bottle and cold packs but tbh none of them help much even the Meds I'm on but hae been told peppermint water works it does calm it down for a little while but not much hun but worth a go put the peppermint in warm water I find it hard coping day to day do you also hun xx

[misty14 in reply to mandyscott1974]

Hi Mandyscott, I'm surprised you don't get any Gastro follow up appt's. I'm seen in clinic every six months by the Consuktant because it's not settled!. Thanks for tips for pain. I find hot pad is good and will try peppermint!. I do find it hard to live with too. It has restricted my life greatly so nice to meet someone similar. I hope you get extra help from that scan. X

[mandyscott1974 in reply to misty14]

thank you me to will find out 12th I'll let u know my gp was on about sending me back with it keep flaring up all the time but my old one did not do much but letter after I had camera to my gp just stated if flares back up to repeat process but I no sooner seem to get it settled then flares up again but the constipation don't help I'm on 200mg of docusate twice Dailey for this now my daughter of 6 yrs has had stomach problems since she was 3 and has took 3yrs and loads of diffrent tests and camera to find out she has IBS she is on mebverine for this bless her xx

[Mary-intussuception in reply to mandyscott1974]

Hi Mandy

Have you heard of

Crohn's and Colitis UK ?

phone no:

0300 222 5700

Have you considered phoning your GP parctice to ask if your scan results are in before you see GP on Friday? Or will you wait till you see her.

Did the doctor doing the scan say anything?

Your daughter has bowel problems also for 3 years and she is only 6 ? Bless her.

Has her Consultant given you her diagnosis?

Would it be helpful , I wonder, if you phoned the Colitis helpline and told them about both of you - see if they can help in anyway. Benefits advice/ grants maybe?

Look up their website also ?

Hope it goes well on Friday - you have a long list for your new GP !

God Bless

xx Mary

🐥

[mandyscott1974 in reply to Mary-intussuception]

my daughter has been diagnosed WITH IBS hun she is on mebverine medicine for this and I also did not know about this number and will ring it for advice thank you I asked the lady doing the scan and she said she couldn' tell me anothing and results will go to my gp I rang my gps and the results were not back yet I have a double app at 8.40 on Friday so will be able to have a good chat with her about everything just hoping she listens to me and my worries I find this site more helpful than my own gp as ppl here understand what your going through and nice to talk to people in the same situation as myself hopefully gp will listen and thank you Mary for advice much appreciated xx

[Mary-intussuception in reply to mandyscott1974]

Mandy you are very welcome and Oh dear, how can a little one be diagnosed with IBS?

I have had bowel problems since a young adult/ teens but I can't remember before then.

I have IBS not IBD - I do feel for you though. Hope the GP explains everything for you. Make a list of all the blood test you want to ask for and present her with it after she's explained the scan. You will have malabsorption due to your Colitis.

Hope your new GP is more helpful than your old ones.

All the best for Friday xxx

♡

[Mary-intussuception in reply to Mary-intussuception]

Mandy

I would also bring up the matter of your daughter's diagnosis of IBS with your new GP. See what her reaction is.

xxx🐥

[misty14 in reply to mandyscott1974]

Hi Mandyscott

That's young for your daughterto have IBS!. Poor lass!. Makes you wonder about genetics.My mum has it and Mebeverine works well for her!. Good luck for 12 th. I'm at GP 's too then so hopefully we'll bring each other luck. X

[mandyscott1974 in reply to misty14]

let me know how u get on also x

[misty14 in reply to mandyscott1974]

Thanks Mandy I will. It's a problem unrelated to colitis. Easy to collect extras, you have too!. Fingers tightly crossed. X

[mandyscott1974 in reply to misty14]

how did you get on with your gp seen mine and surprise surprise yet again been told this time pain clinic is a last resort for ppl that have no were else to go and if they suffering really bad I'm sorry and sat there and said your having a laugh I'm. no pain 24/7 and struggling to cope with the pain oh she said then decides to progress about with my left shoulder and said I think you need a shoulder scan as now she says could be to do with this why I'm getting the pain and to ha e a steroid needle instead I said the hospital diagnosed me last new years day with this and since then been back and forth to a and e to be told the same and now getting messed about all the time then got told she needs to read through my notes to see what previous gp said and to have scan inbetween what a bloody joke on a positive side my scan was clear she seems to think I have something else she did say what but tbh carnt remember the name I was just so annoyed and upset xx

[misty14 in reply to mandyscott1974]

Hi Mandyscott

What a mess!. Glad though your GP wants to help with shoulder. She's right about pain clinic being last resort but could have explained better!. Gp's have a limit in pain relief that they can prescribe on their own!. If your problem needs simething stronger then they have to send you to a pain clinic !. My GP wanted me to vary dose of beta blocker for racing heart. It's been very successful for it. I tried without one tablet this afternoon and had awful symptoms so took one again and got better. I see my Rheumy specialistnext week and will tell him. Thanks for asking and good luck to you for scan. X

[Mary-intussuception]

4

There is a list of symptoms on Thyroid UK website. Some people print a copy , tick every symptom they've had/ have and take the list with them to see GP .

[ld724-g]

Fibro seems to affect every part of the body. I believe people with Fibro don't absorb the nutrients they need. I've had adrenal fatigue about 5 years ago and I went to a nurse practitioner who put me on supplements. It took awhile, but it helped. One thing I know that helps is to buy quality vitamins, not cheap ones. I've had Fibro for about 17 years. I'm on the Fentanyl patch, which can make you constipated, but I make sure I get enough fiber which helps keep me "normal". It's easier said than done, but don't overdo it. Massage helps if you can afford it .

[petehs]

Good luck hope all goes well.I have crohn's and Fibro.I move from london to manchester last year, and was sent too pain clinic but was told the same nothing new just keep exercising.I was told doesn't matter how much pain im in must exercise.Some days i can't walk because of pain,they just don't understand.Keep taking tablet but 8 years on still in chronic pain.Hope all is well with you.Peter

[DISC]

My advice, be prepared, write down questions, be direct, and don't feel let down if you don;t get the response you want. I see a pain psychologist which i find really useful, but the pain clinic can sometimes feel a bit useless depending on who you see.

[petehs in reply to DISC]

Thank you