New Here, but oldpain !

[CJ183]

Hello, ! I am CJ183 , a woman who suffered from CFS/ME for 30yrs with viruses and gut problems , and now Thyroid and inflammation . Nerve pain is one of my main pains, it is all over in different places nervous system was attacked by a virus, (epstein barr virus) wanted to try a pain killer but I do react to drugs like amyltriptiline which make me hot and its unbearable ! Anyone been in a similair predicament ? Anyone out there with any suggestions ? Many thanks in advance love from, CJ183 . Ps, new here hope this post is adequate, ! can answer any future questions , posting this after midnight so really tired . Bye for now !

[Mary-intussuception]

Hi CJ

Hope you managed to get a lovely sleep.

Am wondering what your Thyroid diagnosis is and if you are are Levothyroxine and what dose.

I suffered many years on and off with many illnesses. Was very late diagnosed with:

Hashimoto's Autoimmune Thyroiditis and Hypothyroidism in 2011. On 75mcg Levothyroxine.

Do you also have Underactive Thyroid? It could be the root cause of lots of things if you had it a long time, like me, before diagnosis.

Have you ever had Thyroid Antibodies (TPO & Tg) blood tests?

Have you asked for blood tests to check your Vitamin D, B12, Folate and Ferritin levels? As you could be low on some of these due to absorption issues.

I didn't know about this till earlier this year. Asked for tests and have Folate deficiency and Vitamin D insufficiency. No one tested back in 2011 or ever, as far as I know. I'm now on presribed supplements : Vitamin D and Folic Acid.

I've never been diagnosed with CFS/ME but have lots of gut problems and had lots infections particularly in upper-respiratory tract. Have very severe degeneration of Cervical Spine also. The Osteophytes are protruding into my Oesophagus. Lots of bowel problems, Diverticular (since 30yrs old) Arthritis, Lympthoedema etc but I'm OK.

Can't you take any NSAIDS for the pain? Have you ever been refered to Pain Clinic or Physio? Are you able to get about, still able to drive? I have just started back swimming (slowly! ) two lengths.

X 🐥

[CJ183 in reply to Mary-intussuception]

Hi Mary, I appreciate your reply , in answer to your questions , yes I do have low thyroid problems ! I was diagnosed with thyroid issues in 2000 , my thyroid was hyper then but I was in America trying to concentrate on the CFS treatment then and had that much to concentrate on with very little energy that it was kind of a side issue ! However I started taking Armour thyroid and it helped for a while then eventually mt thyroid became hypo and burned out. Specialist in the NE of england said I was not a typical thyroid patient because he was used to seeing bigger ladies ! Stupid comment ! Anyway I was diagnosed by someone else in 2008 with hashimotos thyroiditis , I am now taking 150mcgs of levothyroxine . Trouble is that my body chemistry changed and that along with the adrenal and thyroid not working properley and the CFS, (well ! Its a whole picture thing !) , caused my nerve pain . I am better than I was ears ago ,but I have been in my flat for the last nine and a half years ! I used to drive and I used to work as a nursery nurse for 15yrs with pre-school children , which I loved ! Can you tell me what SAIDS are ? I have been out of touch for afew yrs and the world has passed me by ! I have only been using the internet for the last year and have been taking in alot of information that has given me more insight into my thyroid problem . I did have a physio but she could only help a little by telling me what exercises to do . ,we kept in contact for a while and then I was dicharged ,as I was so tired at that time . Sorry to hear of your problems, can you tell me what you mean by osteophytes ? Are you managing ok ? So glad you could swim 2 lenths, I can swim about 2 widths (in my dreams ) Do you think anyone at a pain clinic could point me inthe direction of some good pain killers ?, ones that Imay not react to ? Am taking vit D and have taken B12 and folate . Tests were supposed to show that i was not lacking in anything but going to have private test done soon ! Including thyroid again . Sorry for long post ! Kind regards, from C J .